Colorectal Cancer Awareness Month 2024 – Hard Braking in the Fast Lane: An Interview with Jessica Settle

For this episode of Karger’s The Waiting Room Podcast, we spoke with Jessica Settle about her experience of being diagnosed with colorectal cancer at the age of 28.

Jessica is the dedicated mother of a 12-year-old daughter. She is advocating for colon cancer awareness and spreading hope wherever she goes.

Please note that Colorectal Cancer Awareness Month is held in March each year.

Published in February 2024, Karger’s latest patients’ resource on colorectal cancer is freely available here.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Episode

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Welcome to The Waiting Room podcast, Jessica.

Hi, it’s great to be here today.

 

Hi, it’s so good to have you. So, Jessica, can you please tell us what made you aware that something is wrong and led you to seeing a doctor? How did you get your diagnosis?

Yeah, so I actually saw a doctor originally around the age of 24, and I saw my primary care provider because I was having a lot of blood in my stool, and it was bright red blood. So, it was kind of alarming. You know, that’s never a good sign. She referred me to a specialist, and he kind of brushed it off as being hemorrhoids. And at the age of 24, I’m like, okay, well, hemorrhoids. Got it. I had had a daughter, so I had suffered from the constipation of being pregnant and, you know, my hemorrhoids were definitely there. But it just didn’t feel right. And I continued to suffer with the blood in my stool and then some bloating and constipation. And I eventually transferred to a new primary care provider in October of 2019, when I was 28. And she was younger and more progressive and took me a little bit more seriously and was like, well, this doesn’t seem right.

So, she referred me to a gastroenterologist here locally in Tri-Cities, Washington, and the gastroenterologist was also a younger female who was a little bit more progressive. And she’s like, I will test you for gluten allergies and all of the things. But I also think it’s important that we do a colonoscopy. So, we scheduled my colonoscopy for December of 2019, right after Thanksgiving. And I had my procedure, and she came into the room when I was waking up in recovery and let me know that she was pretty positive that I had colorectal cancer, that I had a very large mass – and showed me pictures – in my sigmoid colon, and said that the reason that I was consistently having the bleeding in my stool was because that when I would go to the bathroom, that my bowel movements would pass through and pass and irritate the tumor, and then it would cause the bleeding and so we got to the source of that, and it was a pretty quick move from there.

 

But you didn’t expect this outcome, did you?

Absolutely not. No. It was very shocking, you know. Colon cancer is commonly associated with older people, right? It’s an older person type of cancer. That’s what you get. That’s what you learn. That’s what society tells you. So getting that diagnosis was very, very shocking.

 

Were you alone when you got the diagnosis?

I was not. I was married at the time and my husband was with me in recovery. So, we were together during that diagnosis.

 

And that was good, wasn’t it? Because, I’m really shocked to hear about how you learned about your diagnosis. You’re just waking up and waiting for the good news that everything is okay. And then you get this life-changing news.

Yeah, it definitely turned our world upside down.

 

And you said it. Colorectal cancer is associated with older patients, with older people. And so, while age doesn’t have a major influence on therapy, the living conditions of younger and older patients differ greatly. Can you tell us at which point in your life were you when you received your diagnosis? You already mentioned that you have a kid.

Yep. I have a 12-year-old daughter now. So she was, what, nine or ten at the time. No, younger than that, probably like eight. And we had just sold our house, we were living in a rental property, and we had downsized a lot because we were building our dream house. At age 28, I’m married, and I had my daughter and we’re building our dream house and we’re living our best lives and, you know, having all the adventures. And we had a motor home and we had gone camping a lot. We were just doing the things that normal young adult parents do, and it was very life-altering.

 

I can’t imagine this, because you don’t reckon with such a life-changing diagnosis. So, I’m sure you were facing tough decisions with regard to treatment. What was helpful in this process? Did you get the help and support you needed? Or if not, what was missing?

Yeah, so that is kind of a complicated answer. Things moved very quickly from the time I was diagnosed. I moved from being diagnosed on December 1st to having my colon resection surgery on December 16th. So, it’s a very quick process. I had lots of appointments between that time period, and it was a bit overwhelming, and it moved so quickly. They’re trying to get you in and get you taken care of and get everything ready for you to start treatment. But there’s not a lot of time for you to think about much else. Not a lot of time for you to think about “well, maybe I should get a second opinion” or “where do I even go to get a second opinion?”. “What resources are available to me?”

So that was a little overwhelming. I’ll be honest, I didn’t get a second opinion. I went, I moved. It was just so quick that I moved right with whatever treatment they told me. And I looked stuff up and I joined a couple of Facebook groups and looked at different things and kind of prepared myself for what it was going to be like. But it was very difficult. I did get assigned what they call a nurse navigator, and she was available via text or call at any point in time during treatment and could check in and she would go from, she met with my surgeon and I, and also met with my oncologist and I. So, she would attend different appointments at various different stages in my treatment. And that was helpful.

The one thing I would say that was missing after everything was done, is the mental health side of it. Nobody prepares you for what it does to you mentally and what it does to your relationships and the strain that it causes. And that was something that I dealt with after I was done with treatment. Probably a year or so after I was done with treatment is when I first started going to therapy. And I was very lucky, I have a local therapist, but it was in the height of COVID, so we were doing all of our stuff virtually. And she actually suffered from colorectal cancer as well. So, she was very relatable to me. And I could talk to her about all the things and she could help me advocate and she knew what resources were there, more than what I could find. Because being a young person and being in the height of COVID, you know, the support groups that would normally be in person weren’t a thing. And again, with me being a young person – and it’s normally an older persons’ cancer diagnosis – I didn’t relate to any of those people. So, for me, the Facebook groups that I found were helpful, I could find the younger people that were associated with colon cancer as well. That was helpful.

 

But it took a year to find therapy and to start therapy. And during this year, you just struggled along and tried to come to terms with it.

Yeah. I didn’t realize the impact that it had on me. Because, during treatment, during chemo, I kept a very positive mindset and a very, very positive attitude and outlook on everything. I chose that, because I thought it would make everything easier for me, and it did. It is going into those dark places that makes treatment that much harder. So being able to keep it positive and everything was great, but keeping it positive doesn’t mean that you’re dealing with the ramifications mentally or physically of going through treatment and feeling those things. So being able to go to therapy was really helpful for me and it helped me just come to terms with my diagnosis and the anxiety that comes along with it afterwards. Nobody prepares you for that anxiety. You know, you get your first couple of scans after you’ve completed treatment and everything and nobody prepares you for that, that anxiety that can happen while you’re getting your scan or prior to or after the scan. So, it was helpful to learn some coping mechanisms.

 

You’re expected to be positive. Now the treatment is behind you, so, look ahead. But I imagine that you do not only have to be positive for yourself, but you had a young family. So, parents probably, or the whole, the extended family. You had to be positive for them as well. And cheerful, I think.

Yeah, yeah. You know, having a young child while you’re there doing that kind of treatment is hard. You don’t want them to see you in that negative mindset. And so you try and stay positive. And then again for extended family, my own parents, my siblings, I’m just trying to stay positive for them as well. It was a lot.

 

Yes, I think so. So, what was the best advice you received and what would you like to tell other younger patients who are diagnosed with colorectal cancer?

Honestly, I don’t think that I received any really great, fantastic advice along the way because nobody really knows what to say to somebody that’s going through that, you know? So, I don’t have a whole lot on the advice part that I received it. But I would just tell other younger patients, stay positive, use your resources. There’s so many resources out there for us as young adults, through the Colorectal Cancer Alliance, through other companies that help with that stuff.

Go to therapy. Do it right away. Don’t wait until it’s later, and you have to deal with the ramifications of it later. An hour at a time, once a week or once a month or whatever you need. Do it and rely on those resources. You know, that’s what they’re there for. I’ve joined different programs to help be available for other people that are in my age group, that are going through similar situations, and that it’s been helpful for them, but it’s also been helpful for me to be able to give back to those people.

The other advice that I would give younger patients or people that think they might have something going on is not to give up. You know, when I initially went in at 24, they kind of brushed it off, I kind of brushed it off. I didn’t really know. I was young. I didn’t know how to advocate for myself at that age, no. But now, looking back, I wish I would have advocated a little bit harder, gotten a new doctor, persisted on saying “something is wrong”. So just don’t be afraid to say “this is not right, I don’t think this is right”. And keep going back. Go find another doctor. Go to the emergency room. Do what you need to do to make somebody listen. And the sooner you can catch this, the sooner that you can start treatment and the sooner you start treatment, you know, the easier it will be. When you can catch it super young or super early, and you don’t have to do as harsh a treatment.

 

So, listen to your gut feeling and insist to take it further until you really know, yes, this is it, now I know what it is. Even if you don’t, even if you might prefer not to know what it is exactly. But in this case, you just have to look at it.

Yes, listen to your gut and push for it, because … Push for it – not push for it in the bathroom sense, but push hard hitting your screening.

 

Insist! Then what would you say what needs to be done to improve prevention of colon cancer in adolescents and young adults, as nobody obviously seems to reckon with colon cancer at this age?

Yeah, honestly, we need to lower the screening age. And I know it comes from just it being a cancer that normally older people get. But even without the genetics – I had genetic testing and it’s not genetically prone to me. So, there never would have been anything that I could have pushed for genetic-wise, saying “hey, I need to be screened”. It just needs to be a lower age. 40 is where it should be, maybe even lower than that, in my opinion, because more younger people are getting diagnosed with that at earlier ages, under the age of 40.

So, it’s just pushing for that lower age range and making it easier to get those screenings done. Here in my city, we are short on gastroenterologists, so it can be a little bit more difficult to get into and get that screening done. So, making those resources available, whether it be getting a colonoscopy or being able to do one of those at-home tests and making sure that it’s affordable and available for anybody at any age range would be my advice.

 

It doesn’t have to be a gastro- what do you call it – a gastroscopy right away, but there are other kinds of tests you could do before, just to move it a bit further and not being brushed off, like “yeah it’s nothing”. So yeah, I agree with you, but it’s rather a political question, not a medical one.

Unfortunately, it is, and I wish it wasn’t. You know, our health shouldn’t be mixed into the politics of all of that.

 

But it is, as you said. So, information is key in a way. And my last question refers to your contribution to a focus group that reviewed the newly published Fast Facts for Patients booklet. I will put the link into the show notes. What are your recommendations for anyone who develops patient material?

My recommendations are to do those focus groups to involve people that are affected by those things, because then you’re getting the facts and you’re getting the feelings and you’re getting to know the patients and what they’re actually going through instead of just what you read in a textbook or what you might find in studies. So getting that information directly from patients is really helpful. And it can help other patients that are reading that material be able to relate to it.

 

So, it comes back to the “nothing about us without us”. It’s the old truth.

Yep.

 

Okay, Jessica, thank you very much for being so open and sharing your experience. I’m sure this will help others who find themselves in the same situation. So, thank you very much for us for this talk, for this interview.

Yes. Thank you so much for having me. I really appreciate it. I love being able to advocate for other people and provide information. I’m always open to people asking questions, even though it might feel like it might be too much information for them to know. You know, the more information somebody knows, the more that they can help themselves. So, it was nice to be able to share that information.

 

Thank you very much, Jessica. Bye-bye.

Bye.

Revision of the EU’s Pharmaceutical Legislation: An Interview with Claudia Louati (European Patients’ Forum)

For this episode of Karger’s The Waiting Room Podcast, we spoke with Claudia Louati about the revision of the EU’s pharmaceutical legislation.

Claudia Louati joined the European Patients’ Forum (EPF) as Head of Policy in May 2023. She leads EPF’s policy and advocacy work and steers EPF’s engagement with EU and international stakeholders on key policy issues. Before joining EPF, she worked at the Europe Office of the U.S. Food and Drug Administration in Brussels, where she promoted EU–U.S. regulatory collaboration on medical products. Claudia holds two master’s degrees in European Affairs from SciencesPo Paris and the London School of Economics.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Welcome to The Waiting Room, Claudia.

Thank you very much, Susanne.

 

I come to the first question. This is: In April 2023, the European Commission proposed to revise the EU’s pharmaceutical legislation. Claudia, could you please explain why this revision of the EU pharmaceutical legislation is so important?

Yes, indeed. It’s a very important development. So, just to go back to the basics, maybe. Before a medicine reaches patients at the local pharmacy or at the hospital, it has to go through a very strict authorization process to check that it is of high quality, it is safe and effective. And scientific experts from public regulatory authorities have to look at all the evidence that the company produced in order to support their marketing authorization, and they need to decide if the product can be put on the market. And that allows then the company to apply for reimbursement at a national level whenever they get this authorization.

 

So, excuse me to interrupt. They need the European approval to market their drug nationally?

Yes. So, for most innovative products, of course, you know, there are some products that can still be approved from a regulatory standpoint, at national level. But for most of the new cancer drugs, the new gene therapies that are coming onto the market, they have to be approved first at the EU level.

And that then allows them to be reimbursed at the national level. And so, what this legislation does is that it puts in place the standards and the requirements for the granting of marketing authorizations throughout Europe. It ensures a harmonized approach to the requirements at all levels. And it creates, as well, the European Medicines Agency. So, of course, you know, this framework is not new in the sense that it’s been a few years now that that is in place. But the first legislation that harmonized those requirements was made 20 years ago, about 20 years ago.

And so, of course, now there is a need to update it and to make sure that it’s fit-for-purpose and that really it’s adapted to the 21st century. So, for example, you know, manufacturers are using artificial intelligence in the development of their products and then using new types of evidence, you know, that were not foreseen in the initial legislation. And that framework has to be adapted. So, that’s why it’s an important piece of legislation, because it has a direct impact on people, obviously. You know, the medicines that you’re using on a daily basis, you know, have to be regulated somewhere. It’s in that legislation.

 

And when you say it was adapted 20 years ago – 20 years ago, EPF was founded. So, obviously the first or the last revision was made without the inclusion of patients.

Yes. So, of course, that was long before my time. So, I can’t comment on how involved we were at the time. But indeed, EPF is 20 years old now, and I think we’ve gone a long way in terms of bringing the patient voice to the legislative and to the policy process and ensuring that the framework for the authorization of medicines is much more patient-focused. That’s the voice that we bring now in this current debate with this new proposal to ensure that it is more patient-centered.

 

Yeah. And what are EPF’s main requests regarding this legislation then?

So, I would say there are three big buckets that kind of bring our priorities:

The first one is really about patient involvement across the life cycle of medicines. We believe that more can be done, you know, in order to make sure that the medicines that come into the market answer patients’ needs. Of course, they have to be effective and of high quality, but they also have to have an impact, a positive impact on the quality of life of patients, for example. And so, we’re asking, for example, to have more patients’ experience data included in the marketing authorization that the manufacturer pushes forward. We also want to make sure that patients are involved in the different scientific working groups that exist within the European Medicines Agency, so that patients can bring their perspective to the regulatory discussions that are happening, into the scientific discussions that are happening.

Another focus for us is really on the availability of medicines. And so, we’ve seen in the press, you know, there is a lot of talk about shortages and some medicines that are just not available. And we know that not all countries are affected the same way. But still, even for cancer drugs or drugs that in the past were not affected by shortages. But now with the supply chains that have become more global and more complex, obviously this creates a lot of issues. So that’s another one of our priorities to make sure that enough is done and that more is done at EU level in order to strengthen the availability of medicines.

And then finally, our third area of priority is about addressing access inequalities across the EU. So, as I was mentioning, once this regulatory approval is in place, the company goes to each member state to ask for reimbursement at national level. And obviously it’s a difficult process to receive a reimbursement because especially for expensive products, you know, the government and the company have to agree on the price that is okay for the both of them, which is not always easy. And so that can take years sometimes. And in certain countries, obviously, that have lower purchasing power or don’t have the same economic situation that means that some medicines are just not available for years and years. And those inequalities, we find them really unacceptable.

So, of course, there is only so much that can be done at EU level considering that all those processes are national. But still we believe that there are mechanisms and incentives that can be put into place to really encourage companies to launch their products across the EU within a certain timeline.

 

That’s very important. And obviously the legislation has to balance the interests of different stakeholders, namely patients, industry, health care professionals, regulatory authorities, payers, etc. So, what are the topics groups can generally agree on?

Yes, it’s true. It’s a very contentious process in the sense that everybody has their own interest. Of course, you know, there are certain things that everybody can agree upon and there are some general goals, you know, that everybody can accept. But obviously, how to achieve them is often the subject of more debates. But I think one thing that everybody can agree on is that we need a strong European Medicines Agency that is able to function in an effective way where there is less bureaucracy, where it is possible to cut that bureaucracy. And that is really well known and that ensures really the safety and quality and effectiveness of the medicines that are on the market.

 

That’s something everybody can rely on then.

Yes, exactly, and a strong regulator. I think, on the shortages’ aspect as well, you know, everybody agrees that it’s not good when patients don’t have access to the medicines that they need. Again, industry and others have different views on what the problems are. But again, this is at least something that everybody agrees on. Environmental issues, I believe, you know, it’s something new. Again, that was not necessarily included in the framework 20 years ago. But, you know, the impact of the manufacturing of medicines on increasing climate change, for example, or even the antimicrobial resistance as well, that is a very threatening issue as well.

Everybody agrees that something needs to be done. We’re not exactly sure how, but it’s still, you know, it’s to make sure that antimicrobials are used in the adequate way and in a way that respects, you know, the stewardship and that maintains their efficacy. And then, of course, you know, there are some specific areas like pediatric medicines, rare disease medicines, where, again, everybody agrees that we need those products and that the market itself is not delivering them and that there needs to be specific incentives for research in these areas. But again, how these incentives should be put into place is something that is open for discussion for some stakeholders.

 

But at least you agree that these are topics that the parties agree on. My next question is where do the interests and claims of the stakeholders differ? Because naturally there will be differences.

Yeah, of course there are differences and based on, you know, everybody’s interests. So, one of them, for example, is when generics and biosimilar medicines should be available. These are copies, you know, of original medicines. They are much cheaper, and they actually improve patient access significantly. And of course, you know, for the branded pharmaceutical industry, you know, it’s something that is threatening their monopolies on the markets. So obviously, it can be open, you know, ideologically for discussion of when those products should be able to enter the market and when the protection of the branded medicines expires.

Another area, you know, again, is about incentives for pharmaceutical research and development. So how do you encourage innovation? And that’s a very philosophical question, you know, because, of course, you can give some carrots or some rewards to products that bring extraordinary innovation. But you also have to take into account the environment. You know, you have to create an environment that promotes research with good access to funding, for example, and these kinds of things. There are other areas about regulatory flexibilities. And so, for those very innovative products where perhaps you don’t have all the necessary evidence at the beginning, but you see that the product could bring a lot of benefits, you know, the level of evidence is something that is also open for debate sometimes.

 

There is something new out there. Everybody wants to have it, but it’s not yet approved. Yes. It’s a dilemma. Could you please describe the process, the how, who, when, where of the revision? And an additional question, when do you expect the revision will come into effect?

So here we get really into the intricacies of the EU system. And I know, in the press sometimes it’s difficult to convey that complexity, and we often say, oh, Brussels did this or Brussels did that, you know. And that’s not exactly how things happen in practice. So, to keep it simple, you know, there are three main institutions in the European Union:

The European Commission is the one that acts as the executive of the European Union. It’s as a kind of secretariat. It has to follow some political directions from the member states and also has its own pool of commissioners that define the priorities. And it’s the only institution that has the power to draft and to put forward a new legislation. It doesn’t do that in a vacuum. Usually, it has to answer some kind of need, you know, that has been identified. There’s a lot of different consultation processes that take place, but that leads to a proposal being drafted, and that’s just a draft. Generally, it changes quite a lot afterwards when you go through the process.

That’s where the other two institutions come in. That’s the European Parliament, which acts like a parliament at national level, you know. It is the representatives of the people that are directly elected. The next elections are taking place in 2024, so it’s always good to call on people to actually go and vote because it has a lot of impacts. And the other institution is the Council of the European Union, which gathers the representatives of the member states. And the Parliament and the Council have to discuss, you know, and to find an agreement, and they put forward their own amendments on the legislation.

And at the end of the process, they get to a text normally that would reconcile all their different interests. So, member states have a lot of power in this process. They can really put forward their own interests, and then they have the opportunity really to amend a lot of the proposals that come initially from the commission. This process can take a while, probably three, five years sometimes of negotiations. It can go faster, but for such a complex dossier – it will probably be a long time before the legislation is actually in place.

 

I just wondered when you said that every member state has a vote or has their say. I just wonder how any legislation passes the EU because – I think it’s a good process and a democratic process – but so many member states with such different interests. One can sometimes really wonder how that parliament, or the EU, is really working, which of course is great. So, you think three to five or maybe more years because health of course is a very complex issue or topic.

Yeah, and because this legislation is very complex and addresses so many different issues, you know, of course there are the standards and there are the regulatory requirements for marketing authorizations. But it’s so much more, it’s about really access to products, making sure that the framework is fit-for-purpose. So that’s why, and obviously, you know, it has a big impact also on the competitiveness of the industry. It’s an important piece of legislation.

 

Yeah. And it has an input on the national level of every country. So, you just mentioned the European Commission as one body of legislation, of lawmaking in the EU. And obviously, the European Commission mentions that this legislation is part of efforts to create a European Health Union. Can you explain what this is? When and why was the European Health Union founded, or is it still an idea? Is it going to be founded? And what is the aim of the European Health Union, and how does or will it work?

Yes, that’s an excellent question. So, the European Union per se doesn’t have a lot of powers in the field of health. It’s regulating products, like medical products, medicinal products or medical devices. But in terms of the functioning of health care systems or even prioritizing diseases, addressing certain diseases, it doesn’t have any real power in that area. And of course, that creates some shortcomings, as we saw during the COVID pandemic, where every single member state was doing their own thing whereas the pandemic was actually a pan-European threat that needed a coordinated approach. And as a result of the pandemic, and also as a result of national healthcare systems really struggling and not having resources to address the issue, I think there was a realization that we actually need a little bit more coordination at EU level in the field of health.

And that’s what this European Health Union is about. It’s about strengthening the EU’s ability to respond to pandemics and to respond to health threats and to ensure, you know, a little bit more coordination. And of course, that has also some implications for access to medicines and access to patients, ensuring that wherever you are in the EU, whether you are in Croatia, whether you’re in Germany, that you can have access to the medicines that you need. So, that’s the idea behind this European Health Union. Of course, it’s a difficult process. You know, there are a lot of member state interests that come into place and a little bit of reluctance as well, because obviously, you know, they want to keep their powers in this area.

But still, it’s work in progress. And I think we’re talking today about things that we did not talk about five years ago. You know, for example, exchanging information on reimbursement of medicines between countries, even purchasing products together, like what happened with the vaccines, the COVID vaccines. It’s something that is very new and it’s very promising.

 

But it’s still an idea or a plan, and it’s not something I could address now and say I have a question for the European Health Union. It doesn’t exist yet.

I mean, it exists in certain ways, in the sense that there are new institutions that have been created. So, for example, the Health Preparedness Authority and Response, who is really focused on ensuring better preparedness for health crises and for future pandemics – so, there’s concretely a new agency. The European Medicines Agency, the European Center for Disease Control also have more power now through the European Health Union. So that’s also something tangible, you know, but it’s true that in the concept itself, it’s still a little bit theoretical, you know, because of course it will take time for countries to get into the habit of exchanging information and doing things together in the field of health.

 

So, let’s just hope that this one pandemic taught us a few lessons, and we learned a lot of it and don’t need a second one to really act on it. Claudia, thank you very much for your time and insight. I learned a lot about how the European health policy works. Thank you very much!

You’re welcome. Thank you very much for having me.

Detectives in White Lab Coats: An Interview with Dr José Cândido Caldeira Xavier-Júnior

For this episode of Karger’s The Waiting Room Podcast, we spoke with Dr José Cândido Caldeira Xavier-Júnior, who is a pathologist focused on surgical pathology, teaching and research. Dermatopathology and cytology are his areas of interest; skin melanocytic lesions, thyroid fine needle aspiration and cervical cytology are his areas of expertise. He works at the Instituto de Patologia de Araçatuba and at Medical School of the Centro Universitário Católico UniSALESIANO Auxilium, Araçatuba, Brazil. He is also a Karger ambassador for health sciences.

Pathology is a kind of invisible field in medicine. It happens behind closed doors – in the laboratory and in the morgue. Mostly, pathologists are depicted as the ones who determine cause of death. However, this is only one side of the coin! A not so well-known fact is that pathologists are indispensable in helping clinicians to diagnose a condition and to decide on the best cure, especially in cancer.

On the role of a pathologist, Dr José Cândido Caldeira Xavier-Júnior also wrote three blog posts for The Waiting Room blog which you find here:

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Welcome to The Waiting Room, Dr Xavier.

Thank you for having me, Susanne.

 

It’s a pleasure. So, first of all, could you please let us know why you chose pathology as your area of expertise?

It’s funny to say that, but when I started med school, I have never heard about pathology. And it happens with most of my students. But it’s funny, because just at the beginning, I was looking for something in medical science that explained the diseases and explains us how to make the diagnoses. And it’s also important, because if you want to make a good diagnosis, you should learn the human body from a biological perspective. As a machine, a so complex and fascinating machine.

So, I started to study, looking for the answers to my questions, and I found part of them in my pathology classes. And I can see, and I agree with this perspective, that pathology is the trunk of the tree that will connect the basic science, anatomy, histology, genetics, cell biology – the roots – with the clinical ones, dermatology, gastroenterology, gynecology. And it’s so nice that we have, like, this connection with the clinical specialties can be made by some specific areas of pathology. For example, dermatopathology is the part of pathology that is focused on any kind of disease that occurs on the skin – the cancer, the inflammatory, the infectious ones.

And I try, as a professor, to show my students how this specialty is important to medicine, and how it’s beautiful to try to understand the cell language, to translate it into diagnoses that influence the patient’s treatment and follow-up. And this is the reason that I decided to choose pathology as my area.

 

So, in other words, you just couldn’t decide what field of medicine would be the most interesting. You chose them all when you chose pathology. Is this right?

Yes, it is. This is my perspective, of course. But I try to share this with my students.

 

Very good. And I think they appreciate it. I would like to ask you, what does your typical workday look like?

It depends where you work, and how many jobs you work. You can work inside a hospital, or in your private laboratory. You can work as a member of a police team, and you can work as a researcher and professor also at the university. Yesterday, for example, I spent my whole morning at the university. After lunch I went to the clinic to perform FNA, fine needle aspiration procedure. It is one of the times of my workday that I spend in touch with patients. And after that I went to the laboratory and spent the whole afternoon analyzing slides.

But during my days, sometimes I spend some hours supervising my students and even studying. Because, you know, the tumor classifications are changing all the time, and I have to save time during my workday to study the new entities and the new criteria, in what I can do to make a better diagnosis. And, I’d like to say also that at the university nowadays we work with active learning. Many years ago, people spent, professors spent most of the time with theoretical lessons, like presenting slides. Nowadays, I like to stay with my students hands-on on a multi-head microscope, analyzing the slides with me. And I think this is important to show them what is our real-life job as a pathologist.

And I like also to explain what is possibly misunderstood about a pathology workday. Because some people think that it’s boring and quiet because we stay inside the office, the laboratory – that’s not true, because you are all the time analyzing different species. One slide is for a lung biopsy, the other one for a skin tumor, the other one for a gastric lesion. Then you are all the time analyzing different species, what is very exciting.

And it’s even when pathologists don’t do procedures, we don’t lose the patient’s care, because we know that each slide is a different patient, and it’s someone’s life, and we should, like, provide the better diagnosis to them. Then, we keep on all the time with the patients in our minds, because they are the focus of our job as physicians.

 

I like especially that you mention the patient again, because sometimes one could get the impression, well, it’s only slides, and it’s the microscope, and you’re alone in the lab. But, so I now learned that your job is really diverse and exciting, obviously. And in all you do, you have the patient in mind. And I really like that you said this at the end of your answer.

Yes, they are the focus of our job.

 

And now could you tell us what is your favorite aspect of pathology?

I can say a lot of things, like the ability to see beyond what the naked eye can see. It’s, like, awesome for us. And the possibility of being in touch with the cutting-edge knowledge of distinct areas is something very nice. It’s also interesting to translate the cell’s language – I would like to say the expression – and the cell’s morphology into something meaningful to treat and to guide the patient’s follow-up.

And also, the feeling that we are saving lives when we are analyzing slides. And I usually say that people sometimes don’t notice, but everyone, when you are submitted to a skin biopsy, this specimen was analyzed by a pathologist. If you go to a gynecologist and he collects the Pap smear, the pathologist will analyze them. Then pathology presents in people’s lives in many different ways, and sometimes people don’t notice.

 

Exactly. Sometimes you are just unseen. But you’re a very important presence, not only in the background, but also at the bedside, obviously.

Yes. Yes. We are like in a multidisciplinary team, and we are an important part to make the diagnosis, because we know that many diseases have a pathological background, and we don’t have, for example, cancer diagnoses without a pathological report.

 

So, you are not only a detective in a white lab coat, but you’re also a translator.

Yes, I like to say that we are translating the cell’s language into something meaningful to clinicians and surgeons to keep on treating the patients.

 

This is a new picture I take with me from this interview with you. Now, could you tell us what has been your most surprising discovery in a cell or in a tissue sample?

We can answer this question in different ways. For example, thinking about modern pathology, it’s quite nice when you can translate, for example, the cell’s morphology in a genetic alteration. And nowadays, we know that some specific genetic alterations transform the cell’s morphology. Then I think it’s nice when you can predict, watching out the cells, what is happening in their genes. But from my background in med school and even my experience with my students, I think it’s so touching when you see for the first time a mitosis process.

 

Could you please explain what mitosis is?

Mitosis is the process of cell division. And we can say that if it’s not the most important, it’s one of the most important processes in life, because you need the cell’s division since we were an egg until now. Then when you see it under the lens of the microscope, a mitosis picture, it’s something so surprising that I can see in their eyes how amazing it is, because we have heard about mitosis during high school, elementary school.

But when you see the picture, you like, becoming real, you can materialize this process, and it’s so touching when people start to say: “Oh, I am also seeing the mitosis picture!” And it is something so important that I spend part of my first classes showing them this process. Because I think to see them, like making more close to them to understand and to study this amazing process.

 

Okay, so they watch something new beginning, and I can understand that this is really fascinating.

 

Yes, it is.

 

So, what are your tools apart from the microscope?

I usually say that the microscope is our third hand. But nowadays it’s a little different, because you can scan the slides and you can analyze the slides on your computer. There are some hospitals in Europe, for example, the pathologists spend their workday on computers and not on microscopes. But you need this, another machine, to scan, to provide this image. And it’s quite nice because you can share your cases with people in different parts of the world.

Aside from that, I can say that our computers and tablets are quite important, because we have a lot of digital books, and you can consult them when you are in doubt, and you need to make a research, for example. And the cell phones, we use some apps. You are in touch with the other doctors in our team and they are important to discuss with them: “Oh, I am thinking about this hypothesis, what do you think about? Do you have CT image to share with me?”

Because people think that a pathological report is something black and white. And the benign and malignant, it’s not so easy sometimes, and we need to join all the pieces of this puzzle with our colleagues from other areas to – at the end – find a good diagnosis. And aside from that, when you do procedures, for example FNA, we need a syringe, needles, gloves, and other things. The pathologists’ tools are more than just a microscope.

 

But a microscope is the basis of everything. It starts with the microscope, but it does not end with a microscope – you need more.

Yes, you’ve got a point.

 

Then we come to the last question, and this is, what further developments do you expect in pathology?

The implementation of artificial intelligence, I think, will change our routine. But I don’t believe they will substitute us. They will help us to make better, faster, and more accurate diagnoses. For example, talking about mitosis. Sometimes we spend half an hour counting them in a tumor. If you have artificial intelligence helping you, you can have this result in a few seconds, and you can make the diagnosis. Then I think AI will help us in pathology to make a faster diagnosis.

 

So, this is a wonderful last sentence for this interview. And, in my words, it means, AI, artificial intelligence, you look at it as a friend or a helper and not as the enemy in future.

Yes, this is the point.

 

Okay. Thank you very much, José, and I’m looking forward to speaking with you soon about further developments, maybe.

Okay, thank you, Susanne, for having me, for such a great opportunity.

 

It was a pleasure.

“For a Better Tomorrow”: An Interview with Nomsa Mtshali (Rare Diseases South Africa)

For this episode of Karger’s The Waiting Room Podcast, we spoke with Nomsa Mtshali, Patient Community and Rare Assist Manager at Rare Diseases South Africa. It is a non-profit organization which aims to assist rare disease patients in receiving access to life-saving treatment and supportive care for improved quality of life.

The Rare Bear Project is a community upliftment program under Rare Diseases South Africa.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Hello and welcome to Karger’s The Waiting Room Podcast. My name is Susanne Meister, and I am your host today. I speak with Nomsa Mtshali who is Patient Community and Rare Assist Manager at Rare Diseases South Africa. Welcome, Nomsa!

Hi, Susanne. Thank you very much for the warm welcome. My name is Nomsa from Rare Diseases South Africa.

 

Hello. Nomsa, before we start talking about your role at Rare Diseases South Africa and the Rare Bear Project, I have a personal question for you: On the website of Rare Diseases South Africa, you are introduced as “Nomsa ‘Three Sugars’ Mtshali”. What does this tell us about you?

It tells you that I’m the most sweetest person ever. So, when I started at Rare Diseases, I was the only person that took three sugars. Everybody was on one sugar in their coffee. And then I came with three sugars and everybody said, because I have this massive, big personality, it was a result of the sugar intake that I was on. And they just decided to just say, because you are the most sweetest person ever, it’s because of the sugar. If you were to drink less sugar, you would not be the sweetest person ever. So that’s why, that’s where “Nomsa Three Sugars” came from.

 

Wonderful! I completely agree, but I’m not sure what a nutritionist would say to this theory. But we’ll leave it at this. Nomsa, I would like to talk to you about Rare Diseases South Africa. It was founded in 2013. Can you tell us a little bit about the organization’s mission and vision?

Okay, Rare Diseases South Africa was founded in 2013 by our CEO, particularly because she had a little boy who was diagnosed with a rare disease called Pompe. And there was just no treatment in South Africa. And she then saw a need that there might be a need for support in South Africa for patients with rare diseases. Our vision as an organization is for those that are impacted by rare diseases and congenital disorders to access lifesaving treatment and supportive care for improved quality of life.

So, our whole mission is to ensure that patients with rare diseases have the quality of life that they deserve. We’re not saying that they should be cured, because we know that with rare diseases, cure is something that does not exist at the moment. However, we just want to ensure that they have a certain quality of life. That they go through their rare diseases, but with a certain quality of life. And we do this through advocacy and empowerment.

 

So, it was founded out of a personal reason by your CEO, but many people now profit or benefit from the idea and from the organization.

Yes. As a nonprofit organization, we literally are the gap. We are the bridge, sorry, we are the bridge between patients and access to lifesaving treatment. And we also, as an organization, we give support to patients. So, we are the bridge also between doctors and patients, patients and doctors, patients to patients. We offer peer-to-peer support groups as well. This ensures that our patients also understand the need of that, the fact that they’re not alone on a journey, because their rare disease journey is a very tough one.

 

I like the picture of a bridge. So, what have been the biggest achievements during the last ten years?

For the past ten years, we’ve managed to get quite a few drugs approved to come, to bring them into South Africa. For the past ten years we’ve also evolved. We have about more than 7,000 patients registered with us. We have about 150 WhatsApp support groups where patients engage daily to themselves. And we have managed to onboard about 2,000 plus health care practitioners with our organization, which also minimizes having to struggle with diagnosis. We have also managed to also get genetic counseling on board. So, if a patient is in desperate need of genetic tests, this can be provided from our organization.

And considering that we are a charity organization, so funding is extremely, very hard, and we have managed to get these things done for our community. And also, the biggest thing, which is our biggest, biggest thing, is advocacy. Ensure that patients get into the right drugs. So, we have managed to get patients, the majority of patients into the correct drugs, particularly the ones that are in need of enzyme therapy replacements, because it’s very, very expensive. So, we have managed to also access that for them. So, it’s been a big achievement.

 

So, there’s a lot to celebrate this year.

A lot of celebrations!

 

Very good. But before you said, before we come to the question of celebration, what are your goals for the next ten years? It sounds as if you had already achieved such a lot, but I’m sure there’s more to come or more to do.

There is honestly more, more we are planning on doing as an organization. And to bear in mind, like I said to you, again, our biggest thing is advocacy to our patients. So, for the next coming years is policy development, and also, our plan for the next coming ten years is collaboration with the state. Because the majority of the state’s patients that have rare diseases, they fall on the side, because they cannot afford this medication, and because the state is not really wanting to pay, because it’s expensive. So, we’re really looking into investing so much time into getting relationships with the state, so that we ensure the quality of life for these patients that are “on state”.

And also, the focus of the next coming ten years is to also ensure that we have proper research. Research resources that will also contribute into getting the patients that are not diagnosed into the correct diagnosis, and the patients that have been misdiagnosed – because we have a lot of patients that were misdiagnosed a lot –, and we’re trying so hard to also get them into the correct diagnosis.

And another big thing as well is to raise as much education and awareness into a health care professional. And also, the cultural differences in South Africa also impact how our patients get diagnosis. So, we’re trying and maneuver into that, getting the cultural differences. So, getting into the markets of the rural people, in the rural, educating them, and being able to get their traditional healers, because we have quite a few traditional healers.

The first instinct, I think in Africa all around, the first instinct, if a child or an adult is sick, their first instinct is to go and see a traditional healer. So, we try to work those relationships in showing that we are not taking away from what they believe in traditionally, we’re just trying to have elevated the misdiagnosis, and also get these patients into treatment. So those are the biggest, biggest, biggest, biggest, biggest plans for the next coming ten years. And obviously access to treatment. It’s always been our main goal.

 

Of course, and access to treatment depends on money. But first of all, you have the right diagnosis. I like what you say. You are not taking or trying to drive away people from traditional healers. You are adding something. So, your organization is like added value. So, money, access to treatment, research and education I heard. These would be for me now the three key points I take away. And now we come to celebration. What have you planned to celebrate Rare Diseases South Africa’s 10th anniversary this year? Anything special?

Because we have Mandela Day coming through and tying Mandela Day with our ten year anniversary this year, what we are planning to do, as a whole team, because we are ten in the team. It’s ten of us in the team, and in celebration, we are not really going to have a big celebration, because in aid of celebrating is in aid of giving to the needy. So, what we have planned to do is that for the next coming ten days of July, that will be the first until the 10th of July, we are going, each one of us is going to do something to give back to the community on that day.

And that is how we are going to check, like, okay, for instance, we’ll say on our social media, we’ll say today is Nomsa Mtshali’s day. She’s going to be doing this, this, this, this, this, this is for ten hours for this, but this, this, this, this, this, this, this, this. So, my biggest plan this year is this school of this lady that does after camp for orphans. So, my plan this year is to prepare food for them. So, in the morning I’m going to prepare breakfast, and then I’m going to go there. Then they’re going to come back from school and then they’re going to have the soup because it’s very cold. They’re going to have the soup. So, I’m going to spend ten hours there. That’s the whole plan for me.

So, everybody has a different thing that they’re doing for these next coming ten days in celebration of Rare Diseases 10 years and also in celebration of Mandela Day. Just giving back.

 

Well, wonderful. I wanted to ask you what your plan is, and I’m happy that you shared with us. I feared that you’d say no, it’s a secret, I can’t tell, I can’t speak about it now, but that’s really great. And I’m sure there will be some sweets for the kids on this day.

Yes, I’m planning on doing mini, little mini care packs for them. Like, I’m going to buy, like, your socks, your beanies, and I want to have something like, I call it “the brave box”, right? So, in my brave box I’m going to have a list of ten things. Something to keep you warm, which will be a scarf. Something to eat when you’re feeling cold, which would be coffee or tea. Something to make you smile, I’ll share a little bit of a joke. Something to eat when you’re hungry, maybe a packet of chips. Something to read when you’re feeling down, a code or something. Something to lift up your day. Something to see you through. Something for my tummy. Something for my body. Some clothing for my body, i.e. polar fleeces. So, I’m going to have a big brave box. So, I’ll cover the big brave boxes because I feel often the orphans are very brave having to maneuver life on their own. It’s very difficult. So yeah.

 

Wow, that sounds really lovely. And it builds a bridge to my next question because I learned that as part of its second birthday, Rare Diseases South Africa launched the Rare Bear Project. And I think this is for the brave children as well. So, could you tell us more about this project or shall I rather say the two projects that are Rare Bear?

Okay. So, Rare Bear was started obviously two years later. And the whole idea with starting Rare Bear was because we have these mini teddies. They’re very soft teddies, they’re extremely rare. So, we had seven animals, which you’ll find most of them in Africa. And the whole idea of calling it the Rare Bear, it’s because they don’t look alike. They don’t look the same. You would have five zebras that look different. And also, because they serve as a companion to our patients, making it easy for them, for our community to spot themselves.

So, if you, Susanne, owned a Rare Bear and I owned a Rare Bear, we go through hospital days together, it’ll make it easier for me to spot you because you’d be holding yours. But okay, I’m not alone in this journey. Rare diseases, as much as it’s rare, it’s not even that bigger. Do you get me? We do have a community. And so, it was started to serve as a companion for patients waiting for their hospital days, their doctor check-ups. Just to have somebody there to accompany them. And it was these mini soft toys that are just giving them so much love, and because they’re called Rare Bears. So, it was always a thing that, okay, no, I’m not alone, I have a Rare Bear. And also, it’s for our community to spot each other. We need them to have companions for tough hospital days. So that was the whole idea behind it. And it’s just evolved.

And this whole project was started by a group of women who live, who come all the way all around South Africa. To be honest with you, Mozambique, Zimbabwe, Malawi, and this is their source of income, this. So, Rare Bear is a project for these women, and it’s their sole source of income. And they never, there was never a point where they were taught how to crochet these, because these toys are crocheted. I said there is not a point they were taught how to crochet, so it was just, we give them pictures. I’m like, can you please make this? And they just make it like that. And it’s just an amazing thing for them. And they’ve evolved.

We have about, right now we have about 52 women that are solely dependent on this project. And because of the need – people just love these Rare Bears – because of the need we then opened it up, so that people can also buy them. We opened up to the market, people can buy them, and own them if they want to. Not necessarily for our patients, but it’s just a special meaning that it’s a Rare Bear. So, people are welcome to donate, to donate them or buy them. So yeah, it’s a big project.

 

Wow, so it’s a social project as well. It’s not just giving. No, it is giving. It’s giving out cuddly toys, but it’s giving out work as well. So, I like the idea. It’s a perfect community, hand in hand. Well, I’m now at a loss for words because I really like the idea. So, it’s like a brave box for the sick children with rare diseases. And for the women it’s a source of income as well. That’s really great. Now, you see, at the end of this conversation, I want to tell you how impressed I am, about all that Rare Diseases South Africa has done and still does to live up to their claim “For a Better Tomorrow.”

And I want to share with our audience a favorite quote of yours by the Brazilian author Paulo Coelho: “We will only understand the miracles of life fully when we allow the unexpected to happen. Don’t be scared to take risks.” I think this is an appropriate way to end this podcast. Thank you very much, Nomsa.

Thank you very much, Susanne, really a pleasure being here. Thank you for the warm welcome and for this opportunity to just speak about our organization and the impact that we have.

“A Strong Patients’ Voice – The European Patients’ Forum”: An Interview with Anca Toma (Executive Director EPF)

For this episode of Karger’s The Waiting Room Podcast, we spoke with Anca Toma about the 20th anniversary of the European Patients’ Forum (EPF) and its future goals. Anca Toma joined the EPF as Executive Director in March 2022. She has over 15 years of experience in European health policy, working in policy advocacy, strategic communications, developing and coordinating successful pan-European advocacy campaigns.

The EPF is the leading voice of patient organizations in Europe. 20 years after its founding, EPF occupies a unique position as the only cross-disease umbrella patient organization at the European level.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Welcome to The Waiting Room, Anca.

Thank you. Thank you for the invitation, Susanne.

 

You are very welcome, and I think we start with the first question. I would like to know, what is the European Patients’ Forum, as I said, also known as EPF, and what have been EPF’s biggest achievements during the last 20 years?

Two very big questions. I will start with the first one, and I think I will give a slightly personal perspective on it. What is EPF? Well, we are the umbrella organization of umbrella organizations of patients, and we were founded and we work on the principle of nothing for patients without patients. So, we strive to collect, represent, and defend the collective voice of patient organizations and through them of their constituencies of all patients in Europe. That is 150 million people in Europe living and working and operating and moving around with chronic diseases.

So, as such, we aim to be the collective voice of patients in Europe. We look after the areas that serve the interests of all or most of our members as much as possible. We work with our members to put together a collective response and a collective voice and we aim to represent really, truly. Now the achievements of the first 20 years: I think creating and developing an organization such as this is an achievement in itself.

 

You are absolutely right.

Achieving this representative nature and this representative vocation of the organization and maintaining it for 20 years is no small feat. So, the nature of the EPF, I would say, is the first achievement. But, of course this is the big stuff, but it’s built on a lot of bigger and smaller pieces of work, things that took a year or ten, that builds that community as it is. So, I’m going back to the discussion that we had at the anniversary event a week ago. And I will draw a few of the comments from some of our, how do I call them, elders – I don’t think they will appreciate being called this. You know, the state figures that helped create and steer EPF in its early years and through the years, indeed.

So, I would start, now I have a few notes here. The democratic nature of EPF, the way we operate, setting up the consultation structure, working with our members and developing the way of working that is truly member-led in our organization, that’s something that stood out for our former Secretary General, Nicola Bedlington. Another achievement that was highlighted during the event came off from a former policy maker, and that was the transformative nature of such a large representative organization that helped shape the European healthcare advocacy ecosystem. That’s obviously very important, because here we are, we’re based in Brussels, and we work on the regional issues, on the EU issues, on the European issues. And building that structure for advocacy is also extremely laudable.

Our former president, Anders Olauson, highlighted the way that EPF was able to make things happen. Now getting things done is not an easy thing, especially when you represent dozens and dozens of members. But we’re able to collect that experience and knowledge from our members and put it to work. And that’s something that, I mean for me and my ethics, is, it resonates very well because getting things done is what keeps us going, right.

And not least an example that came from a former board member, Maria Navarro from Spain. She was and is involved with the Spanish Patients’ Forum, a national organization. It was the aspirational value of EPF, and how it then inspired the creation of umbrella organizations representing all patients at the national level, and she said something about having an older sibling, something to emulate. And that comes out a lot. And it’s happening still today, that we have inspired the creation of national umbrella organizations. So that’s a bit of a long-winded way of answering your question, but it’s something that we’re very, very proud of.

 

I can completely understand this, and I like the comparison of EPF being like an older sibling going forward and inspiring. And what I find amazing, when you said it’s this “Nothing about us without us”. When you started 20 years ago, this was, I think, quite a new thing. Now it’s like a slogan everybody repeats and thinks “Yes, this is the right way to do things.” But 20 years ago, this must have been like a revolution.

It was, I mean, you have to look at, you know, the history of patient engagement and the involvement of patients in health care. And we started from a very paternalistic perspective where patients were subject and not more than that, you know, follow the doctor’s orders. And the revolution that started with, not just with EPF, but with our founding members, was that patients became interlocutors, they became core participants in their own care. And that, you know, that brings me to an aspiration for the future, which is that patients become co-creators of health and health care for themselves and their communities.

 

They have to be taken seriously, because they are the experts on their condition. Expert patient is one other expression. But, so I hear, at this year’s anniversary congress, you had a few older members, as you said, we just call them older members now, and they look back on what they created and what people are doing now. So, my second question would be what were the highlights of this year’s congress, and have you planned other events in the success of 20 years of EPF?

Let me start with the highlights. I think the discussion between our state elders was probably one of the best parts. You don’t have to be old to be an elder. I have to say that, because it’s important. And the spirit is, it is just so inspiring in them. So, one of the highlights was this discussion about how EPF lived up to the promise that it was set out to deliver.

We also had very interesting discussions about the achievements to date from the perspective of our main pillars of work: the capacity building, the working with our members, and building their representation capacity. From the point of view of policy and what we’ve achieved in the environment in the EU, and at the regional level, and from the perspective of our engagement with stakeholders through projects and through our work to put patients forward as part of European initiatives.

And that eased very nicely into a discussion about what we want to achieve in the next ten years. And we said ten because we want to be ambitious and because things are moving at a very different pace, and because we have this critical mass now. And some very ambitious ideas came out. And at the end of the meeting, of course, we unveiled a manifesto for patient organizations’ involvement. We also want to add the element of organized patients to the element of – you said “expert patients” – of patients being involved. We want to talk about the communities as well and how that democratic process is being reflected in policy, in practice, in health care in general.

Do we plan other events in 2023 to celebrate the 20 years? No, we will celebrate with work because we have a manifesto and it needs to be put into reality. So, our work this year is about, what I said before, making things happen, getting things done.

 

So, this manifesto for the next ten years, where can it be accessed? Is it on the website of EPF?

We’re polishing it up and putting it on the website in the shortest delays possible.

 

Okay. Maybe when the interview’s out we already have it. I will put it then in the show notes and if not, I would encourage everybody to have a look at your website and look for the manifesto for the future.

It will be on the main page, I promise.

 

Very good, okay. So, we talked a lot about the state elders, as you called them. And I, when I went to Brussels to your congresses, I was impressed by the power of your youth group. So, I want to ask you, what role does the youth group play at EPF and what are their plans for the future?

The youth group? Well, EPF has one of the oldest youth groups in the patient community. Oldest, you see oldest running. We have a history of working with the youth group. And it was a few years ago that we elevated the role of the youth group by assigning a board of membership spot to the youth group. So, there is an additional element of democracy because there are elections for that as well. It is integral to the EPF’s mission that we have a youth group. This is because this group was created with the mission of training the future leaders of patient advocacy. We are working with these amazing young people and integrating them in our activities.

And this allows us, first, it benefits EPF, because we integrate the voice of younger patients, and then it helps them, because it integrates them into a movement and it provides professional training for their future, for their future careers should they choose to have careers in patient representation and patient advocacy. And this is with the overall ambition of creating the leaders of patient organizations in the future, people who will already have gone through the hoops to learn and to learn by doing. So, yeah, they’re very important.

 

Yes. And it’s again, like the older siblings. So, the people, the older people, I think this is a running theme here in this interview.

But the point is, I don’t want to talk about, you know, age is only a number.

 

I know. Yes. But still, the youth group, I was so impressed when I encountered them, how they led through the program, what role they played. And I never found it in any other patient organization. I never saw such a strong youth group. So, that was really impressive. And I like this a lot. And that was a spirit that sprang to the audience, in my opinion.

Yes. And, you know, and that energy, it’s … I don’t necessarily perceive that there is a different level or nature of the energy and drive between the various generations in EPF. And that’s quite amazing. The energy, that drive, the passion is the same. What’s really important for me is that we bring the different voices across generations, because, well, they’re equally important from a moral standpoint, but also from the perspective and the different challenges of living with conditions for shorter, longer, and the guidance that one generation can provide to the other, and the reminders that one generation can provide to the other and the different learnings from different stages.

 

I agree. It was a kind of interaction, but you gave them a platform, so they could rise and shine. And I really like that. Anca, now a kind of personal question is, as EPF’s Executive Director, what have been your personal highlights in the first year of your term, and what do you want to achieve?

Oh, oh, a personal question. So, I’ve been in EPF for 15 months now. I’ve survived two major events. You know, there’s a lot of work going to prepare them. I think the first highlight is the way we are working on building the team that serves our membership. We are here, you know, we have a very strong secretariat, a very inspiring team. We’ve had quite a few additions in the last year since I joined and it’s been a highlight for me to see it take shape, and to contribute to it taking shape.

Another highlight has been to get to meet our members. And we had, this year we had the first annual general meeting in person since COVID. So, it has been an absolute honor and pleasure for me to be in the same room with these men and women and to have that personal interaction and to get to know them. Because it was quite obvious from the beginning when I joined that it’s an outstanding community. But to actually see them in action in person, it is a complete different level of all. So that’s been a highlight as well.

And yeah, I think it’s, it’s the … for me as a person and as a professional in growing it’s been an education to absorb the perspectives of such a diverse community with such diverse needs and the humbleness of putting ourselves at the service of this community, it remains very inspiring.

 

So very good. You are part of the community and you’re looking forward to further serving them. So that would be your special personal ambition.

It is. It is. My goal is to keep growing myself and the team, and to keep developing our skills and abilities to deliver the promise that we made together a week ago and put that manifesto out to real, you know, to real work, and transform it into reality.

 

Thank you very much. That was such an inspiring discussion. Thank you for your time and your insight, Anca.

Thank you, Susanne.

“No ‘One Type Fits All’ in Lung Cancer Treatment”: An Interview with Dr Anne-Marie Baird (Lung Cancer Europe)

For this episode of Karger’s The Waiting Room Podcast, we spoke again with Dr Anne-Marie Baird, who currently serves as the president of Lung Cancer Europe (LuCE). She is a Senior Research Fellow at Trinity College Dublin, Ireland, and a patient advocate. In this episode we are going to focus on non-small cell lung cancer, genetic predisposition, biomarkers and treatment.

LuCE is the voice of Europeans impacted by lung cancer. The aim of LuCE is to destigmatise the disease and ensure that those impacted by lung cancer get the care they need to achieve the best possible outcomes.

More information on lung cancer is freely available here:

  1. KRAS G12C in Metastatic Non-Small Cell Lung Cancer
  2. When Checkpoint Inhibitor Therapy Stops Working
  3. Biomarkers in Metastatic Non-Small Cell Lung Cancer

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Hello and welcome to The Waiting Room, Anne-Marie.

Hi, Susanne. Really great to be back again.

 

It’s great to have you here again. Last time we met, you explained what lung cancer is and what different kinds there are. We spoke about the signs and symptoms, as well as risk factors and causes for lung cancer. We learned that there are two main subtypes: small cell lung cancer, which accounts for about 15% of cases, and non-small cell lung cancer, which accounts for about 85% of lung cancer cases. So, today, let’s concentrate on the type of lung cancer which is more frequent. My first question to you is what is non-small cell lung cancer and why is it important to differentiate small cell lung cancer and non-small cell lung cancer?

So that’s a great question to kick us off, Susanne, because there are many different types of lung cancer. And as you’ve rightly said, small cell lung cancer is responsible for the least amount of cases. And small cell lung cancer develops in small round cells in the lung called neuroendocrine cells. And they usually tend to grow very quickly and spread early on in the development, and they usually begin in the large airways of the lungs.

When we look at non-small cell lung cancer, there are a number of different types within non-small cell lung cancer. And three of the main types are adenocarcinoma, squamous cell carcinoma, and large cell carcinoma. And again, the type really depends on what type of cells that they come from, because obviously in the lungs there are many different cell types, and these all have different types of functions.

So, adenocarcinoma is one of the most common types of non-small cell, and it starts in the mucus-making glands in the linings of your lungs. Then squamous cell lung cancer: This tends to develop in the flat cells that cover the surface of your airways, and it tends to grow near the center of the lung. And then large cell carcinoma: These are a bit like what they say on the tin. They are large abnormal looking cells, and these cells can be found throughout the lung. So then a large cell carcinoma can be found throughout the lung.

So, the reason why we’ve gone into so much detail there, it’s just important to understand there are many different types of lung cancer. It can really depend on what cell they originate from. And it’s really important to know your specific type of lung cancer, because this is the best way to help determine what the best treatment option is for your specific type of disease.

 

Okay. So, before we come to treatment, I have another question that leads us even deeper into the topic. Can you tell us what makes cancer cells or cells abnormal or different and turns them into cancer cells? Can you ask like this?

Yes, again, that’s another great question. So, I mean, I think if you think of it in its most simplest form, cancer cells are cells that are in the body that no longer obey any rules. So, it’s kind of like you think of rules and regulations. Normal cells obey all of those things. Whereas cancer cells have worked out ways that they can bypass every rule, every regulation that you can kind of have there in the body for your sort of checks and balances, for the body to remain healthy and well.

And these rules, if we think of them like that, tend to be governed by different signals. So, cells will receive different signals and that will help them understand how they are supposed to behave. But of course, cancer cells are doing their own thing and they sometimes don’t even need to receive these signals to do whatever type of behavior they want to do. So just to give a couple of examples, if that’s okay, Susanne. So, for example, cells can receive signals to grow. And normal cells will only grow when they receive this specific signal to do so. But a cancer cell can grow and do whatever it wants in the absence of these signals. Cancer cells can also ignore signals that it gets, telling them to stop dividing, or that, you know, now is the time for those cells to die. Again, normal cells can’t ignore those signals.

And then if we look, for example, in the immune system, the immune system usually gets rid of cells that are damaged or abnormal. The cancer cells, again, have worked out ways to hide from our immune system, so the immune system doesn’t recognize them as damaged or abnormal, and they continue to do their own thing within the body. And these changes in the behavior, these changes in how they look and obey or disobey the rules is really down to changes or mutations in the DNA of our cells. And usually a cancer cell will have accumulated a number of different mutations. And then this influences that bad behavior that I’ve sort of talked about there.

 

So, mutation is a very, very important keyword, and I guess that this is important for treatment as well. So, you target these mutated genes to treat cancer?

Not quite. So, it really just depends. So obviously, as I’ve said, cancer in and of itself is very complex and there’s many, many different types. Sometimes within a cancer there might not be a specific mutation that’s identifiable for whatever reason. And in other cancers, there might be a mutation identified, but there’s not necessarily a treatment available to target that specific mutation, if that makes sense.

But of course, we do know that cancer cells tend to divide very rapidly because again, they’re not obeying any of those rules or regulations, they’re doing their own thing, and they tend to divide very rapidly then. So that’s why you know chemotherapies would have been used, because chemotherapies target those very rapidly dividing cells. And then in that way, chemotherapy can kill cancer cells.

But if you think about where we find specific mutations in a cancer cell, given the advances that we’ve seen, we now have treatments that can target those specific mutations. So, they’re targeting the kind of the defect or the rule that’s being disobeyed within a cancer cell. And this is referred to as targeted therapy. So, in lung cancer, this could be something like ALK ROS1, EGFR or more recently we’ve seen it in KRAS G12C. So, it really just depends on the type of cancer that you have and what mutation may have been identified within it.

 

So you still have chemotherapy to treat lung cancer and targeted therapies as well. If you use targeted therapies, how do you know what mutation causes this special kind of cancer? How do you know which mutation to treat?

So again, another great question. I guess to give it a very broad term and this goes by a number of different terms, but there’s something called biomarker testing or molecular tumor testing. But depending on where you are, there’s various iterations of that wording. But this is to look at different possible markers in a tumor. So, this could be looking at the genes, those mutations we talked about. It could be looking at different proteins, maybe on the surface of the cancer cell. And by looking at these biomarkers it can provide a lot of different information about an individual’s particular cancer type.

And then these biomarker tests can help to identify what type of treatment might be best for someone’s specific tumor. So, it is important to note, though, that sometimes someone can have a biomarker test done, but it may not be necessarily where they will find something. So, you can have a biomarker test, but they might not find a specific mutation or protein. But it’s always very important to talk to your doctor as to whether or not your tumor should undergo biomarker testing.

 

So, biomarker testing is an important part on the path to treatment. Can you tell us how a test for biomarkers is done?

So, biomarker testing can be done in different ways. Usually, it’s done with a sample of the tumor. This is where you would often hear the term “a biopsy was taken”. A biopsy would be taken to determine or not whether a cancer is present. Is it normal tissue? Is it a cancer tissue? If it’s a cancer tissue, what type is it? So, you know, we talked about adenocarcinomas, squamous cell carcinoma, all of that at the beginning of this. So, the tissue is a way in which to do that.

But you can also look much deeper as well with the biomarker testing, looking at those genes, looking at those proteins. And all of this can be done in the lab, and pathologists will look at all of those different results then to help determine what particular type of – well, in the instance I’m talking about lung cancer that might be there – and they can do this, as I said, by looking at the proteins, by looking at the genes. Sometimes they look at one gene at a time, sometimes they look at multiple genes all at one time, which is sometimes referred to as panel testing.

It really just depends what would be available within the center that you’re being treated at or where you’re having your tests, you know, it can vary a bit unfortunately. Now in more recent times, people have also been looking at blood samples. Although tissue is kind of the more traditional option. There are other options now where you can take a blood sample and you could do some tests on the blood sample to help determine whether or not someone has a biomarker on their tumor as well.

 

So, a biomarker is like a passport. You know a lot of about the cancer, the type of cancer then. And you touched on it briefly at the beginning of our interview: treatment. Could you tell us more? What treatment options are there for non-small cell lung cancer?

So, it really again depends. There’s not going to be a one size fits all approach; an individual’s tumor is as individual as they are, really. So, it depends on the specific type of non-small cell lung cancer you have, whether or not your tumor has one of those biomarkers we talked about. It also depends on whether do you have lung cancer that’s an early-stage disease, is it late-stage disease and how are you in and of yourself? Like, you know, how well do you feel, how/what type of treatment option might be best for you depending on your circumstances.

There’s a couple of things involved when we talk about treatment options. But realistically, when we talk about lung cancer and again, it will depend on the specific type of lung cancer you have and your stage. It could be surgery, it could be chemotherapy, it could be radiotherapy, it could be a mix of those. There could be immunotherapy, which is something we haven’t really talked about. So, this is a treatment that helps your immune cells kill a cancer.

And then obviously we talked about those biomarkers. So, there could be treatments where it’s called targeted therapies. So, those drugs that are targeted towards a specific change within your tumor and those are usually referred to as tyrosine kinase inhibitors based on the type of genes where these mutations are found. So, it really just depends on your specific type of disease. And this is why it’s so important to find out your specific type of disease, because it really then can have an impact on what type of treatment might be best for you and your tumor.

 

You said it before: There is no “one type fits all”. So, it is a very individual thing. Your cancer is individual, and your doctor and you, you find an individual treatment then. Can I ask you as a researcher and a patient advocate, what has been the most promising development in treatment of lung cancer in the last five years in your opinion?

So, my opinion, first off, I think just the advancements and the understanding of the biology and the complexity of lung cancer has been really, really important. Because, you know, prior to this, decades ago, it was kind of all lumped into one big thing: It was a lung cancer. Whereas now we know that there’s many, many different types. So, I think that understanding of the complexity has been so, so important. Now that obviously has been outside of the five years, so I do apologize.

I also believe the newer treatment options that have come in, again in the last decade or so and beyond, whether it’s the targeted therapies, the immunotherapies, all of these different and novel treatments, have really made a big difference in the lung cancer community. So, I hope that as we find out even more about the complexity of the disease, we’ll find out maybe more markers that can be used to personalize treatment options to individual people with this disease.

However, I would say on balance, while there has been great improvements, we also need to understand that we need equity in access as well. So, when there’s an advancement within, and again, I’m only speaking specifically to lung cancer, because that’s my background. But where there is an advancement, whether it’s testing for a marker, whether it’s a novel treatment, whatever it might be, we need to ensure equity in access for all, so that whoever it is that has been diagnosed with the condition has the best possible outcome. So, it shouldn’t depend on where they live or how much money they earn or any of those types of things. So, we have to strive for not only advancements, but equity within those advancements as well.

 

Thank you. That’s a very important point and I think you can’t stress it enough: equity and access. I think there’s been a lot to take in during this episode. So, we want to encourage our listeners to have a look at the various infographic summary sheets you helped preparing. Thank you very much for all the helpful information you shared with us, Anne-Marie. Again, this was a profound conversation.

Thanks so much for having me, Susanne.

For Asthma Patients, Education Must Be Part of the Therapy: An Interview with John Harrington

A lot is known about the causes and treatment options for asthma. However, the most important success factors for an effective treatment are the patients themselves. Particularly in the case of chronic diseases such as asthma, patient education should be an integral part of any treatment plan. Patients need to understand their condition, be able to self-monitor their therapy and know how to respond to an emergent asthma attack. As with all conditions, the more knowledge patients have about their disease, the better they can manage it.

For World Asthma Day on May 2,2023, we turned to John Harrington, who is a Respiratory Clinical Nurse Consultant at the John Hunter Hospital in New Lambton Heights, New South Wales, Australia. In addition to publishing the booklet “Fast Facts for Patients and their Supporters: Asthma” (also available in Spanish “Fast Facts para pacientes y las personas que los apoyan: asma”), he has helped in developing a summary sheet for patients about asthma. The summary sheet is available in both English and Spanish. All four resources are freely available online.

 

Could you please give us a basic introduction to asthma: What are the causes and how is it treated?

Asthma is a common chronic disease that affects the breathing tubes in the lungs (bronchioles), causing them to become inflamed, thus reducing the amount of air that can pass through to the part of the lung that exchanges oxygen for carbon dioxide (alveoli). Sometimes extra mucus is secreted into the airways; whilst this mucus is meant to be helpful it can block off the swollen bronchioles so no air flows to certain parts of the lung(s). That description is about the only straightforward aspect to asthma – in reality it is usually pretty complex.

There are many causative factors in asthma and new knowledge is being developed regularly on what causes some people to develop asthma. We know that whether your parents had asthma and/or smoked cigarettes can be a risk factor as can exposure to air pollution at a young age. We find some viruses can be especially problematic in both causing asthma and making asthma much worse. I explain to my patients the inflammation of the airways is due to a complex interaction between their body, its immune system and the environment they are exposed to.

On the plus side; we are able to administer medications directly to the airways to alleviate the inflammation and to prevent it from reoccurring. We can do this in the form of inhaled medications. For more than 95% of people this will take the form of a “preventer” medication that will have a small dose of steroids – like a steroid cream for a rash on the skin. Often the preventer will be mixed with another medication that is designed to open the inflamed airways up and keep them open – we call this a bronchodilator, and it is usually a long-acting one that will last for around 10 hours.

Up till recently we would give patients short-acting bronchodilators, called “relievers” as the first step of asthma treatment. We are moving away from this approach as we have found too many patients end up relying on a reliever and not taking their preventer inhaler; some of the preventer medications work as well as a reliever and can replace the reliever inhaler all together. Your doctor can discuss what the best inhaler is for you. Specialist nurses like myself are very familiar with all inhalers and can troubleshoot or advise a doctor if there are problems with your preventer inhaler.

 

How can a patient prevent an asthma attack?

Asthma attacks can happen at any time to any patient with asthma. We call any worsening of breathing that requires an increase in treatment an attack. This will often mean taking steroid tablets such as prednisone for 5 or more days. Attacks can be serious enough to need treatment in A&E or admission to hospital or tragically death in too many cases. We try to ensure these awful experiences do not occur and we do that by prescribing preventer inhalers – so it is very important that people with asthma take their preventer inhalers as prescribed. The preventer takes a couple of weeks to work; they do not feel instantly beneficial.

Avoiding exposures that make asthma worse is important; we call these “triggers”. Allergy testing can be beneficial in identifying some triggers such as house dust mite or animal allergies so people with asthma can avoid exposures that can cause attacks. Other triggers can be less defined but no less unpleasant such as fumes or fire-smoke; people with asthma should avoid being exposed to this.

 

Why is an asthma diary helpful?

The nature of asthma means it is variable day to day and it can be difficult for people to recall how bad and frequent the bad days are nor the good days. There is a lot of research showing that people with asthma underestimate their reliance on their reliever medication and regularly downplay their symptoms, especially if they experienced asthma as a child.

By keeping a diary that monitors symptoms, reliever use and medication use as well as attacks when they occur, it can help your doctor and nurse understand the severity of the asthma. There are plenty of smartphone apps that are able to record this easily. We often like to include peak flow recordings in the morning and night. Peak flow is a small cheap tool that measures how hard you can blow; it helps diagnose asthma and can be used to inform people with asthma when they need to take action to prevent further deterioration.

 

What is an “Asthma Action Plan” and why does every patient need one?

Having clear instructions on when to take medication is important to prevent attacks and for attacks from getting worse. Most of these plans use a “traffic light” format – “green” for when well, “orange” for when you feel you may be worsening and “red” for when you recognize you are having an attack. Action plans can reduce hospitalizations and shorten the period of bad asthma symptoms as well as help you to remember what medications to take.

 

What has been the best innovation in the treatment of asthma in the last ten years? What breakthroughs do you expect in the next ten years?

I would suggest two innovations:

  1. The recent change in guidelines to avoid reliance on reliever medication. A little boring as far as innovations go but I expect this to be very beneficial in the years ahead in preventing people’s asthma progressing to a point where it interferes with their enjoyment of life.
  2. The development of treatments for severe asthma (asthma that remains bad despite max-dose inhalers) such as bronchial thermoplasty – which is where a respiratory specialists uses a scope into the airways of the patient to heat them up to reduce the amount of muscle buildup. Another innovation is monoclonal antibodies which are being used for many diseases especially in immunology and rheumatology. These medications switch off very specific parts of a person’s immune system that is responsible for triggering the inflammation in their airways. It is so exciting to have patients come back and say “Now I know what feeling well is”.

 

Thank you very much for the interview.

“Look after Your Largest Organ”: An Interview with Prof Willie Visser for World Melanoma Day and Skin Cancer Awareness Month

For this episode of Karger’s The Waiting Room Podcast for World Melanoma Day on May 1, 2023, as well as Skin Cancer Awareness Month in May, we spoke with Prof Willie Visser about the importance of skin cancer prevention and regular check-ups with your dermatologist. Prof Visser is the Head of Dermatology at University of Stellenbosch, Tygerberg Academic Hospital, Cape Town, South Africa. He earned his medical degree from the University of Stellenbosch and completed both his Master’s degrees in Family Medicine and Dermatology at University of the Free State in South Africa. Prof Visser has a passion for medical education and teaching. His research focuses on inflammatory skin diseases and skin cancer, especially in patients with skin of color.

An Infographic Summary Sheet for Patients on skin cancer, self-examination and prevention is freely available.

Video Interview

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

It’s good to have you here, because by now, the majority of people are aware of the importance of skin cancer prevention. We know we must protect our skin from the sun and regularly see a dermatologist to be checked for skin cancer. Now, Willie, why is it important to be familiar with your skin and keep track of moles, spots, lesions, and any changes in general?

I think that’s an excellent question. And the reason we say that as dermatologists is firstly, we want to detect skin cancer early. You know, skin cancer is such a common cancer in all races, in all sexes. And probably one of the leading causes of mortality and morbidity in most people in most countries in the world. So, it’s very important for us to catch that early because treatment is then very effective. For most skin cancers, if you catch them early, they are 100% curable. And if you can get them early, we have a very, very good treatment plan for these cancers.

So, that’s why we always advise that you are aware of what’s going on in your body, especially if there’s any pigmented spot or mole, that you constantly, constantly keep your eye on that, be aware of how it looks, and if it rapidly enlarges or changes, then you definitely should report it. So, I think the whole idea is, be very visible, and know what’s going on in your body will also give you peace of mind and have a little bit of more control what is going on with your health. And I think for people with higher risk factors, it becomes even more important to be.

So, for everybody it’s important, but especially if you have a risk factor and, Susanne, that can be something like people who work outside, have of a lot of sun exposure and sunny holidays, burns as a child. So, people with UV ray exposure, especially at an early age or constantly, should be more aware of the visibility of skin cancer. Also, certain vulnerable populations who are immunosuppressed, people who had organ transplants and who are on immunosuppressive therapy, people who have immunosuppressive diseases like HIV, for instance. So, that’s another group of people. Also, the amount of moles. If you have a large number of moles, your chances for the development of melanoma are also higher.

And then depending on your personal or family history of melanoma. Did somebody in your family have skin cancer, especially melanoma, or you yourself had it previously? And then a group of people who have very pale skin, almost like the Irish heritage, very pale skin, freckly, light eyes, light skin color, almost never tan, but always burn. Those people have much more susceptibility to skin cancer. So, if you fall in that specific group, even more the reason to be very adamant in checking your lesions, going for regular skin checks at your dermatologist, and report any change if you see that.

 

Skin cancer is a very visible cancer. So, you should detect it early, because then the chances for a good treatment are very high. I think this is a very important message. And I think it’s interesting, too, that you mentioned the people who are at risk. So, the other thing you say is “Know your risk factors”.

Absolutely.

 

So, skin cancer often develops in areas exposed to the sun, as you said. But skin cancer can also develop in rather unusual places where you wouldn’t expect it. Can you tell us more?

Yeah, I think that’s very important for people to know. And that’s if you go to a dermatologist, also the places that we will vigorously check. I always say, if I only check in the areas that you can check, I’m not really doing my job. So, I must check on the back, for instance, between the buttocks, for instance, a very important place to think about is the scalp. We always think our hair protects us, and it does. But as we are getting older our hair gets thinner, you get more UV rays on your scalp. So, that’s a very important point to check. Tip of the ears, for instance, is another important place to check. Your lips. And then also remember, even melanomas can develop on the genitalia, on the vulva, around the anus, on the penis. So, even the genitalia should be checked or even be, just be vigilant on the development of any new pigmented lesions there. And then even the inner thighs.

So, it’s places that we don’t really think about. And then I think, very important places to think of is the palms of the hands and the soles of the feet, because that’s usually where people with skin of color get melanomas. Anybody can get it there. But percentagewise, people with pigmented skin are more inclined, statistically, to get melanomas of the hands and the feet, and also of the nails.

For us, we need to be very vigilant to educate our patients with skin of color, to specifically look for palms, soles, and also around the nail plate. Any darkening there, any new dark spot there, especially a dark line that is getting thicker or even destroying the nail. And then any dark, moly spot that is changing on the feet is a very good indicator that that lesion should be checked out and most likely will be biopsied to exclude a melanoma.

 

So, basically, the whole surface of your body, will it be exposed to the sun or not, you can develop a cancer there.

Yeah, absolutely. And the risk factors are a little bit different. So, we know about the UV risk factors for your body. And it’s not necessarily always chronic sun exposure. It’s also that periodic sun binges when you take off your shirt and you burn in the sun. So, that’s why we know that males, usually white males, get their melanomas on their trunk, because that’s areas that are usually relatively protected. But when you expose them to the sun, you usually burn.

Women get burned statistically more on the legs. But it is just as important to also spread that message. So, check the hands, check the feet for the development of melanoma. And the risk factor there is probably a little bit different. And we don’t understand them very well. Is it trauma? Is this some infection? Is it just a statistical difference? But we also know that these types of melanomas that we call acral melanomas, have even different genetics. So, we know that the trigger is probably different than the UV damage that we see in the sun-exposed areas.

 

This might explain or is a good bridge to my next question, because skin cancer has long been perceived as “a disease for people with fair skin”. But obviously this is not true. So, how do you and your colleagues fight this notion?

I think all is about education. And what we know is that everybody can get a melanoma. The melanomas are totally color-blind. Anybody can get them. So, it’s so important to spread the message that all races, all people with any types of skin tone can develop a melanoma. Obviously, the higher your melanin or your skin color, the lesser the chance you will get it in the sun-exposed areas. But you can get it still in those other areas.

If you look at incidences of melanoma, it’s much higher in people with fairer skin, but they are still developing in people with quite darkly pigmented skin. So, we need to fight that message. And all the public type of message that we have, we need to tailor it to our population and make sure that we speak to the acral melanoma groups, which is: “Except for checking your skin, also check your palms, check your feet, and check your nails.”

We constantly need to be aware of that. And interestingly, we’ve done a study in our final year medical students, and we asked about 100 students. We gave them different pictures. And some of those pictures were these melanomas on the hands and feet of pigmented people. And less than 10% of those final year medical students correctly diagnosed that it’s a melanoma. And I mean, I teach them in their fourth year dermatology and I tell them about this, but it almost wears off. And then in a way, even our public or let’s say the health care service is not aware of the fact that people can get melanomas on the hands and feet and nails. So, we really need to make sure that this message gets through to patients, but also to healthcare workers and to the media to spread that message. And that’s why I am so privileged that I can speak to you about this today.

 

Thank you. So, education is key. That brings me to the question I would want to ask you: What is the ABCDE of skin cancer and why is it important to know about it?

So, that’s usually in any public education process, you want to learn people something very easy. So, we use a mnemonic, A, B, C, D, E, and the A stands for asymmetry. But maybe before I get there, I should tell this is when we look at pigmented lesions. So, if we look at a mole, for instance, or any pigmented freckles, then the first thing you look for is the A, and that’s asymmetry. If you fold the lesion, it must probably fold on each other. So, what it looks like on the one side, it must look at the other side.

The B is for the border. Usually that border should be very regular, and it should be very well seen. But if it fades into the vicinity and becomes irregular, that’s wrong. The C is for the color. So, any change in the color, any difference in color, if you get to see two or three colors in a mole, that’s something to be aware of. Then if we go to the D, that’s the diameter. We always think if a lesion becomes larger, or larger than for instance the back of an old pencil with an eraser. So, if it gets larger than that, and it then constantly changes, it’s something to think about. For me, the D is more the diameter that changes, so anything that’s getting bigger. And then the E is for evolving. So, any change, any crustiness, any symptoms that you’ve never had before on that lesion, that is very important to take note of.

But saying that, you can now think about the melanomas we talked about, for instance on the hands and feet or other places, that they don’t always fulfill these criteria. You can get a nodular melanoma, which is a very dangerous melanoma that just starts as a rock, as a reddish or darkish little bump, that grows fast and bleeds. So, any red or bleeding bump should also be regarded. And again, I always say that ABCDE and then check your hands and your feet and your nails. That’s very important.

And we talked about melanoma in people with higher pigmentation or with people with skin of color. And what is also seen is that these people have actually a higher disease burden. And also worst outcome. And it’s not because the melanomas are necessarily more aggressive, but it’s because they’re not aware. And when we see them, they have these large, thick tumors. And then the outcome of these are dismal. So, it’s very important to have a very low threshold for the development of these cancers on the hands and feet.

 

Okay. That’s a lot to take in. And I think we will put the ABCDE plus your information “check your hands, feet and nails” into the show notes. Because it’s really important to know this and maybe read about it, if you forget what it means, the ABCDE. So, my last question for you is: What is your personal approach when it comes to preventing skin cancer? You as the expert?

I think the universal message is that we know the most important trigger for skin cancer or the development of skin cancer is UV rays. So, always protect yourself from UV rays as much as you can. And that’s the general rule: You always cover up. So, you put on a hat, you put the sunscreen, you put dark glasses, you cover yourself with clothes, and you use sunscreen in the areas that you can’t cover with clothes – that’s your face and your hands. And you make sure that you use a broad spectrum sunscreen of at least 30 to 50. I always say, in South Africa, use a 50 and above as much as you can. Don’t use a sunscreen because you’re going to tan or lie in the sun. That’s not what sunscreens were designed for. It’s: Cover your body with as much as you can and then cover those areas with sunscreen that you can’t cover with clothes or with other protection.

And another, I think, very important message is: Don’t use artificial tanning booths. Those UV rays are extremely damaging, not only for skin cancer, but also for skin aging. So, it’s much better to either go your natural color or to use some other alternatives, like a spray tan that is much safer than that. But don’t use artificial tanning booths. That’s very, very important. And then go regularly for checks, especially if you fall into that high-risk group that I’ve said. And remember, even age is another risk factor. So, the older we get, the more regular we should get our skin checks. On your first visit to the dermatologist, they will determine your risk profile and tell you when you come back for your follow-up. And that’s a very important point.

And then lastly, I think just as part of our whole holistic management, it is important for us to live a healthy lifestyle ,to exercise, to eat well, to drink a lot of water, to stay out of the sun, as we say, don’t smoke, not necessarily for skin cancer, but as a general idea of good living and also to make sure that your immunity is then good to fight any type of skin cancer. So, I think that will summarize my almost like practical approach to tell in help alleviating the burden of skin cancer.

 

Well, thank you very much. And I think there still has to be done a lot education-wise, because when I think of the sun, I think, yeah, I want to go out, I want to feel the sun, I want to be there without covering up. So, we all have to learn how to think differently and approach the sun. It’s like the sun turned from a friend to an enemy, which it shouldn’t be. But yeah, let’s still enjoy the sun, but be careful.

It’s absolutely not the enemy, and we want to have good quality of life, and living outside and doing things are so important, but it’s just being a little bit more vigilant and just a hat, your sunscreen, your glasses to protect your eyes and protective clothing. I think you can still do exactly the same. You can go to the beach, go for a swim under the umbrella, put your protective clothing on, put your sunscreen on the areas. So, I think you can build it into your lifestyle. And especially we live in a very sunny country, still enjoy all the good things in life, but just be a little bit more sensible. Think a little bit before. Put your sunscreen in your training bag. Put it in the cubbyhole of your car, so that you are never caught out of hand and don’t burn in the sun.

 

Okay. Thank you very much. Thank you for taking the time and speaking to The Waiting Room, Willie.

Absolutely a pleasure, Susanne.

International Women’s Day 2023: An Interview with Sonja Dinner (The DEAR Foundation)

It is a fact that sociocultural factors determine taboos. Taboos then can lead to restrictions, which in turn may affect the application and acceptance of various health measures. This is especially true with regard to women’s health.

Sonja Dinner from The DEAR Foundation knows a thing or two about cultural taboos surrounding breast cancer and self-examination. We are very happy that she agreed to speak with us in the run-up to International Women’s Day on March 8.

 

Sonja, first of all, would you please tell us about The DEAR Foundation’s mission and vision?

We are a financially independent charitable foundation capable of acting quickly and flexibly. 15 employees at offices in Zurich, Jerusalem and Monrovia as well as some 200 local project staff develop, steer, coordinate and manage our projects. As a lean non-governmental organization (NGO), we support women and children around the globe directly and improve their precarious situations.

Our fields of action are mainly in education, health, child protection, women’s rights, economic empowerment, and support of peaceful coexistence between religions.

The vision of The DEAR Foundation is a world without poverty and that all people can lead a self-determined life. Therefore, our mission is implementing projects to improve education, health and socioeconomic empowerment – especially for women and children to break the cycle of poverty.

 

I would especially like to hear about one project The DEAR Foundation initiated: the DearMamma App. What does this app do and why should every woman have this app on her smartphone?

The free DearMamma App in 13 languages provides help for learning how to do a regular self-check of your breasts, guides you through self-examination and helps you set reminders for your next self-check. As breast cancer is not preventable, early detection is key to avoid death! Therefore: Regular self-examination can save your life!

The earlier breast cancer is treated, the more likely it can be cured. Regular breast checks can help you detect abnormalities earlier and get treatment faster.

 

What else is The DEAR Foundation doing regarding women’s health?

The DEAR Foundation has various projects worldwide to improve women’s health. For example, we support psychosocial and medical care for young women in Burkina Faso or offer out-patient medical care to the rural population in Haiti. Furthermore, we have been supporting the construction and design of a breast center at the EMEK Medical Center, Israel. This is just a small extract from all our projects to ensure women’s health.

At this year’s “Schweizer Frauenlauf” (Swiss Women’s Run) in Bern we take part as the main charity partner and hope to motivate many women in Switzerland to care for their health – and to extend the awareness for breast cancer.

 

What is The DEAR Foundation planning for this year’s International Women’s Day?

International Women’s Day is important because more people can learn about our partners’ activities through their events. The DEAR Foundation plans to share these events through social media so that the positive changes for women worldwide get the attention they deserve.

Women play an important role in every community across the world. The DEAR Foundation appreciates this and supports them daily through local partner organizations so women can fulfill these roles and achieve more! We remain committed to positive change for women’s health, rights, safety, and empowerment.

 

Many thanks for the interview and for your time!

“Anyone with Lungs Can Get Lung Cancer”: An Interview with Dr Anne-Marie Baird (Lung Cancer Europe)

For this episode of Karger’s The Waiting Room Podcast, we spoke with Dr Anne-Marie Baird, who currently serves as the president of Lung Cancer Europe (LuCE). She is a Senior Research Fellow at Trinity College Dublin, Ireland, and a patient advocate.

LuCE is the voice of Europeans impacted by lung cancer. The aim of LuCE is to destigmatise the disease and ensure that those impacted by lung cancer get the care they need to achieve the best possible outcomes.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

It’s great to have you here, Anne-Marie. As you are a cancer researcher and a patient advocate, let’s jump right in with the first question: What is lung cancer? What are the different kinds of lung cancer?

So very simply put, lung cancer is a disease that starts in the lung cells. So, it just means that the cells within the lung start to grow and divide abnormally. And then over time, they create a mass of cells otherwise known as a tumor. And it’s really important to understand that if you have a lung cancer that goes to another part of the body, such as the liver or the brain, this is still a lung cancer.

In terms of the different types of lung cancer, there are two main subtypes:

  • non-small cell lung cancer, which accounts for about 85% of lung cancer cases, and also
  • small cell lung cancer, which is about 15% of cases.

Non-small cell lung cancer is then further divided into a number of subtypes, such as adenocarcinoma, squamous cell carcinoma and so on.

And then within that adenocarcinoma can be further divided based on the different markers that are on the surface of the tumor. And one that people might be more aware of is something like EGFR positive lung cancer, which would mean that there’s an alteration in EGFR on the tumor cells in the lung.

 

So that’s quite a big family of lung cancers. What are the signs and the symptoms of lung cancer?

You’re absolutely right. There’s a huge variety of different lung cancers. It can also be very complex in terms of the signs and symptoms. There are also many of those, and some of these can be overlooked or maybe normalized. One of the main driving symptoms is that of a persistent or a long-term cough or a long-term cough that has changed in some way. Breathlessness is also one of the common presenting symptoms of the disease. And then there’s others, such as fever, appetite loss, weight loss, fatigue, feeling weak. You can have bone pain, particularly shoulder, chest or rib, and you can also get finger clubbing, which is where the tops of your fingers look very different. So, there’s definitely quite a large range of different symptoms that people can present with.

 

This will probably make it difficult to diagnose. But we come to the diagnosis question later. I first wanted to ask you: What are the risk factors and the causes for lung cancer?

The one that people are going to be more aware of is that those with a smoking history are more at risk of developing lung cancer. However, it is very, very important to understand there are other risk factors outside of smoking history. And these can be if you have exposure to secondhand smoke, radon, asbestos, certain chemicals in water such as arsenic or uranium; there can be certain chemicals within your workplace or in the environment that you live in that can also increase your risk.

If you have had previous radiation therapy to your chest, this can also increase your risk. And then when we look at things such as infections, if you’ve had a lot of different infections within your lung, air pollution is another big cause of lung cancer.

A family history of the disease. And then there are some other diseases that can increase your risk, such as chronic obstructive pulmonary disease, also known as COPD.

It is very important to understand that you do not have to have a history of smoking to be at risk of developing lung cancer, approximately 15 to 20%, depending on the population you look at, can have lung cancer where there is no history of smoking. Anyone with lungs can get lung cancer.

 

That’s important to know and to listen to your body if you have symptoms like this. So, how is lung cancer diagnosed?

So, usually a person would present to their primary health care with maybe one of the symptoms I have described, such as the persistent cough or breathlessness or fatigue or whatever it might be that they’ve identified, that is not normal. They will then be taken through their medical records. Usually you’ll have a physical examination to see things like weight, pulse, blood pressure, all of the usual suspects, I guess. And then you can have a range of blood tests that are done. And then most importantly, you’ll have a number of diagnostic imaging tests performed as well, such as a CT scan.

And then following that, if there’s evidence of something that’s abnormal within the lung, it is usual then to follow up with what’s called a biopsy, where there’s usually a little piece of tissue taken from the growth within the lung. And then this is used to determine whether or not what they find within the lung is a lung cancer. And then there can be other tests that they do to more accurately diagnose the specific type of lung cancer you have.

Because we’ve already mentioned lung cancer is very complex. There are many different types. So, the pathologist will do various tests to determine the histology, which is to do with the tissue. And then they could also do some biomarker testing, which is to do with those surface markers that I mentioned before, such as EGFR.

 

So, it’s quite a journey to be diagnosed with lung cancer. Once you have the diagnosis, the next or the most important question, of course, is how is lung cancer treated?

The way in which lung cancer is treated can really vary depending on the specific type of lung cancer you have. So this is why it’s really, really important to get an accurate diagnosis of your lung cancer, because this will then help to dictate treatment. Treatment will also depend on what stage of lung cancer you have. The stage of lung cancer is whether it’s still within the lung or whether it has spread outside the lung. It can also depend on how you are yourself. Do you have any other medical conditions? And it can also depend on what your goals are for your treatment so what is the best type of treatment you want to receive for your type of disease?

But depending on all of those factors, surgery could be an option, with the surgical removal of the tumor. Chemotherapy could also be an option depending on what type and stage. You can also have radiotherapy. You could have a combination of chemotherapy and radiotherapy, which is called chemo-radiation. There are also targeted therapies. So if your tumor has a specific marker, you can get a therapy that’s targeted towards that. There’s also immunotherapy. So, an immunotherapy is a drug that’s given that helps your immune system fight cancer cells.

And sometimes people might have one of these treatment options or they might have a mix of treatment options. That really just depends, again, on what your specific type of lung cancer is and what the stage is and how you’re feeling as well. So again, lung cancer is quite complicated and the care pathway in and of itself can also be quite complicated.

 

So there is a range of treatment options, which is the good news.

Yes, there are a lot of different treatment options depending on the specific type of lung cancer that you have. Although, it’s very important to note that not all diagnostic tests and not all treatment options are available to everybody because we have a lot of inequalities in lung cancer care. What we want to obviously strive for is if there’s something out there that can help someone have a better outcome. We want to try and ensure that everybody has access to that, whether it’s diagnostics, treatment or care.

 

So this is the vision and mission of LuCE, obviously.

Exactly. We want to have best possible outcomes, but as well as that, we also want to have the best possible quality of life, because sometimes that’s neglected, but it’s not just about living longer with the disease. It’s also being able to live longer with the disease, but also having a very good quality of life as well.

 

I think that’s an important aspect. Now, at the end of our interview, is there anything else you would like to add? Is there an aspect of this topic that is especially close to your heart?

So, especially close to my heart is the topic of the stigma around lung cancer. I have a personal connection to lung cancer. Both my aunt and my granny died of small cell lung cancer. And as a family, we experienced lung cancer stigma. And lung cancer stigma is something that makes a very difficult diagnosis even harder for a family. And it’s just very tough. It’s even hard to put into words how tough it is.

We also know that lung cancer has a huge psychosocial impact, more so than any of the other cancers. And when people perpetuate stigma in the language that they use or the images that they use, this just adds to that psychosocial impact. And it can make just things much darker and much harder for not only the person living with the disease, but also those around them, their family, their caregivers and so on. So, I would really ask people to think before you speak and break the cycle around lung cancer stigma and the blame game that so many people are experiencing with this disease.

 

Well, thank you, Anne-Marie, for sharing such a personal experience with lung cancer. And I think you’re absolutely right. I agree with you. And thinking before speaking is a very good sentence. So this was a really interesting conversation. And I think we should continue this. I hope you will come back to The Waiting Room for another podcast episode.

Absolutely happy to come back at any time.

 

So, thank you very much. It was a pleasure talking to you.

Thanks for having me.

“Break the Stigma”: An Interview with Jade Corbridge (Zero Suicide Alliance)

For this episode of Karger’s The Waiting Room Podcast, we spoke with Jade Corbridge from the Zero Suicide Alliance. She is a first class MSci Psychological Sciences graduate from the University of Liverpool. Jade has experience working in the Mental Health and Addiction sector, which is her primary area of interest. Currently she is a Research and Development Assistant for Zero Suicide Alliance, Mersey Care. For more information, go to the Zero Suicide Alliance website.

It seems that the word “suicide” alone is a taboo and should not be mentioned. Naturally, this makes it difficult or even impossible to initiate a conversation with someone who might be feeling suicidal. How do you best approach them? How can you help them? However, Jade is familiar with these questions, and luckily agreed to be our guest.

For further information, you can also go to the 24/7 Helpline of the Samaritans or find a suitable helpline.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Jade, you’ve been working for the Zero Suicide Alliance since 2021. Could you please tell us a bit about the Zero Suicide Alliance and about its mission and vision?

So, the Zero Suicide Alliance ultimately is an NHS charity hosted by Mersey Care NHS Foundation Trust. Our aim is to break the stigma that surrounds suicide and to enable leaders to drive meaningful action and prevent suicide in the UK, and globally, too. More than 700,000 people worldwide die by suicide each year. And we really believe that everybody needs to come together to prevent these deaths.

So, the Zero Suicide Alliance provides free online suicide awareness training that teaches people how to identify, understand and help someone who may be feeling and may be experiencing suicidal thoughts. And we also develop interactive and evidence-based resources for people to understand the rates of suicide in their area. Our aim is to empower all people to take positive action against suicide, and we believe that we can learn from each other and share best practice for suicide prevention. We use data and research to drive real change. And ultimately, we support one basic principle, which is that suicide is preventable.

 

So suicide is preventable – I strongly believe in this. Could you tell us what are obvious or hidden signs that someone is ideating suicide?

Yeah, of course. When someone is ideating suicide, their words and actions can provide real signs to us that we can look out for. And so, someone may talk about, you know, wanting to take their life or wanting to die, which is obviously very important. They might talk about having great guilt or shame about themselves or even being a burden to others. They may feel very hopeless and helpless and may not feel like they have anyone to reach out to. But also, there are signs that may be less obvious, such as changes of their behavior.

A really important one would be if they’re making a plan or if they’ve started researching ways to die and withdrawing from friends and family, which could be becoming more distant or less engaging and isolating themselves a lot and wanting to be on their own a lot. And also, one sign is that if they engage in risky behaviors such as using alcohol or drugs, having concerning social media posts, so they may post online that they’re feeling lonely or they’re planning on ending their life. And another one is eating more or eating less and sleeping more or sleeping less. So, there are a lot of signs, and it’s really important to be able to recognize these so that you can help a person that’s in need.

 

But then what is the best way to react if you suspect someone close to you or to your friends and family is ideating suicide?

At the Zero Suicide Alliance, we really encourage people to have open and honest conversations with someone that may be feeling suicidal. And one of the main reasons that we have suicide in our name is because we want to break that stigma around suicide. And we really believe that it’s important to be direct and ask that question: “Are you thinking of suicide or are you feeling suicidal?” Because by asking these questions, you are giving that person the permission to tell you how they really feel. So, if you do suspect someone close to you is ideating suicide, we believe that you should follow three quite simple steps which are “see, say, and then signpost”.

So firstly, we have see, which is going back to the hidden and obvious signs. So, is their behavior any different? Are they talking about suicide? Are they acting in a different way? If they are, it’s important to say to them, you know: “Are you feeling suicidal?” Because talking about suicide, it doesn’t make it more likely to happen. And asking these questions can be very hard, but it shows that you’ve noticed things and have been listening to what they’re saying. And it also shows that they are not on their own, that you are there, and you care about them. That’s important. Also, ask whether they have a plan. So, if someone has already done something to hurt themselves or is planning to do so, this is important to know so you know what actions to take next.

And then lastly, it is signpost. It’s really important because when we have an accident or if our car breaks down, we know who to call and we have a number there in the list of directories. But often we don’t know who to call if someone that we care about is considering suicide or is having very poor mental health. It’s really important that if they are at immediate risk that you should take them to your nearest emergency department if they’re a risk to themselves or others.

But if they need urgent help but can be kept safe and not at immediate risk, then it’s really important to help them book an emergency appointment with a doctor and call a local urgent mental health helpline. An important one is to signpost to helpful charities. So, I know in the UK we have the Samaritans, which is a 24/7 helpline. There may be other charities out there and globally that can help you get support and I think lastly always make sure that you’re following up with them. Always check in with someone that may be feeling down or may be struggling because it’s important for them to know that you’re always wanting to help them.

 

I repeat it because this is very important: See, say, signpost. It is easy to remember, I think, and it kind of contradicts what I said at the beginning, that suicide, the word alone, seems to be a taboo. And you now tell us: “Yeah, but don’t follow this. Mention it. Put it out into the open and talk about it.” Talking about it seems to be a very important aspect.

Yeah, it really is. And if you do say to someone, you know, “Are you feeling suicidal?”, it may make them think about how they are actually feeling, and they may have the confidence then to be a bit more open about how they’re feeling and say “Yes, you know, I am feeling suicidal” and “Yes, I do need that support”. So, it’s really important to just have those conversations and tell that person that you’re willing to help them when they’re feeling like this.

 

That was really new for me, to be that open. So, I already learned something. Could you tell us more about the risk factors? What are risk factors that make people consider suicide?

The reasons why people may consider suicide or even taking their own life are very, very complex. It’s not normally just down to one thing. It’s down to a combination of things, and a lot of them are health and social factors. There are major risk factors or a list of major risk factors that someone contemplating suicide may have. So, one of these are having a previous suicide attempt or currently maybe showing self-harm behaviors. And if someone has a dependency on different substances such as alcohol or drugs. And one important one is financial issues, and especially currently with the cost-of-living crisis that we’re now facing, this has very large impacts on people’s mental health. Previous or current mental illnesses. One is if they are socially isolated.

So, loneliness has a really large impact on mental health. And if people think that they have no one that they can reach out to, this may lead to them internalizing their thoughts and that can lead to an increase of suicidal ideations. And also if someone has a chronic disease or disability. Chronic pain has a really huge, significant impact on depression, anxiety. This could be a catalyst for suicidal ideations. At the same time, risk factors can vary by different age groups, different cultures and many other characteristics. So, tatistically men are more likely to die by suicide.

Other risk factors are people that might be in the LGBTQ community, young adults and people from an ethnic minority background. And another one that I didn’t know that much before I did the research, but certain jobs or occupations may have a higher risk of suicide in the UK. So, in the UK, people within the construction industry tend to have higher suicide rates. More often than not, men within this industry have a very high risk of suicide. I think because it’s that taboo and stigma around opening up and talking to other people.

 

It’s a man’s world and you don’t talk about this?

Yeah, I think so, yeah. And there’s not a lot of support out there for men. And so, yeah, this industry, it’s got very high rates, which is concerning, but it’s good that research has highlighted this because it means that more can be done for men in this industry.

 

There are several individual risk factors, but the times we are living in are not easy ones, so this makes it even worse. So, I think in these times, the work of the Zero Suicide Alliance is more important than ever. Have you anything special planned for this year?

This year, we’re looking to focus our efforts on what’s really needed, which is developing new resources and finding new data that we can use within these resources and creating new training modules. So currently we’re working on developing a suicide awareness training module for prisoners. This can be used for prisoners within prison or afterwards when they are released into the community. And we are also in the process of developing a wellbeing tool. So, we’ve got a very busy and exciting year ahead of us.

 

That sounds good. That sounds really interesting, and I think we should follow this topic up once your new resources are ready. So, at the end of our interview, is there anything else you would like to add? Is there maybe an aspect of the topic that is especially close to your heart?

Yeah, I think one thing that’s really important to mention is, you know, always be kind. I think as a whole we have a real shared responsibility to prevent people taking their own lives. And I think especially now with everything going on, it’s important to look out for one another as you never know if a person is struggling. And again, I think it’s important to take our training because it will enable you to have that confidence to have a potentially life-saving conversation with someone that you might be worried about. So, I think one of the take-home messages that I’d suggest is, you know, keep talking, be kind. And remember that there’s always someone out there to talk to and that you’re never alone.

 

Thank you very much, Jade. You see, my take-home message is “Have open and honest conversations”. And I think that’s what we just had. So, thank you very much.

Health Literacy Enables Informed Decisions: An Interview with Catherine Richards Golini

In this episode of Karger’s The Waiting Room Podcast, we talk with Catherine Richards Golini about health literacy. Catherine works as a Healthcare Publications Editor at Karger Publishers and is an experienced medical editor, a teacher of English for medical purposes and a writer of plain language summaries (PLS) and patient resources. She holds a PhD in Applied Linguistics from the University of Swansea in Wales.

The World Health Organization (WHO) defines health literacy as “the cognitive and social skills which determine the motivation and ability of individuals to gain access to, understand and use information in ways which promote and maintain good health”. While we can’t influence the level of knowledge or personal skills of an individual, we can make sure the information we as a publisher offer is relevant and easy to understand. Thus, we support patients and their supporters in their efforts to make informed decisions and be on a level playing field with all actors of the health care system.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

I know that health care, communication, health literacy and patient-centered medicine are topics that are close to your heart. When and how did this interest start and how did it develop?

I love talking about health care, communication, health literacy and patient-centered medicine, so this might be a long answer. I was a language teacher for many, many years. I taught English in England and in France and for 20 years in Switzerland. And the last 15 years I was teaching medical English. And because I enjoyed medical English and medical language and medical communication so much, I decided to do a doctorate as an adult. I was in my early forties, actually, when I started my doctorate, and my doctorate was very much about health care communication. It was a doctorate in applied linguistics, but very specifically my doctorate looked at patient materials for radiography and applied some applied linguistic concepts and themes etc. to written patient information for radiography. Just to try and find out really why it is that people don’t often understand health care materials and to see whether or not some corpus linguistic tools, that’s computerized analysis, whether that could somehow reveal some of the problems with the language that then may help us produce better materials. So, that’s how the interest started.

 

And where do plain language summaries fit into this?

Well, plain language summaries. I can answer that question in two ways. I can answer the question “How did you get involved with plain language summaries?”, and that’s very easy to answer. I was approached when I was doing my doctorate, and I’m involved in it in a patient information forum and chatting about these things. Somebody contacted me and said: “Listen, I have a company and I produce plain language summaries and I need a linguist who knows about this kind of thing. Would you come on board and review our materials?” So that was how I professionally got involved.

But in terms of health literacy and plain language summaries, what’s the connection? Well, plain language summaries, in common with health care materials in general, need to be created with health literacy and readability in mind. Readability is essentially how easy something is for somebody to read and comprehend. Now, this is very much a topic in health care materials because around 40% of adults in the UK and a very similar number in most European countries find it difficult to understand the health care materials that they’re given or they come across online. And that’s hugely problematic, of course. And health literacy is all about being able to process health information to understand it and to act on it. So, by that I mean to make well-informed health decisions for themselves and the people they have responsibility for. So, that’s the link between, I suppose, health literacy and plain language summaries.

 

And can you tell us what makes for a good plain language summary?

Well, that sounds like a simple question. Unfortunately, the answer is not quite as simple [laughs]. I can probably tell you what makes for a bad plain language summary. And the reason I approach it this way is that plain language summaries come in all sorts of shapes and sizes. They’re not all short. They’re not all like abstracts. Some of them are much longer, some of them are graphic and illustrated, a bit more like an infographic, if you like. Some of them are part of the original research paper. Some are standalone summaries with their own ISSN number.

What makes for a bad plain language summary is when it’s not clearly written for people outside of the field. So, we have to keep in mind that a plain language summary is not just an abstract, it’s not like an abstract. It might look like it and the content must be the same, but it has to be written in a different manner. And we know it’s written for people outside of a specialist field because it’s free of technical jargon and it doesn’t use acronyms. Or if it does, it will explain them and it defines any terms that are specific to the specialist or scientific field. So, there’s no unnecessary detail, and there may also be extra information to provide background context, because a lot of the readers of these plain language summaries don’t have that background contextual information. So, that might be what makes for a good and a bad summary [laughs]. It’s the same answer.

 

It sounded like a checklist where one can really tick off the boxes to see if this is a good or a bad plain language summary, what is still missing and where more work has to be done.

Absolutely. In fact there are some very good guides out there which really are like checklists. You know: Think about this, think about that. Have you done this? Have you checked this? When you consider you end up with possibly just 250 words, there’s an awful lot of work that goes into producing a good plain language summary. And then you also start adding extra information if you need to. So, you always have to keep the readership in mind. You’ve always got to keep the end user in mind. And it’s quite a skill writing a plain language summary. When they’re done properly they will be written by the people who wrote the original research paper or be reviewed by the people who wrote that research paper. They have to be peer-reviewed.

 

I’d rather go for the review than for the writing, because what you just told us is that you’d need an awful lot of skills. And I’m sure not every researcher who is a good researcher has the language skills. So, I’d rather go for a plain language summary writer and then have it reviewed.

Yes, I think a lot of researchers would want to do that as well because I think it is a skill. Writing is a skill. Any form of professional writing is a skill. And I think that a researcher is not skilled with writing plain language. Most people aren’t. Plain language is simple language, but you have to also be aware of appropriacy of vocabulary and lexical terms and how to go about simplifying a sentence, cutting down a 12-word sentence to a 9-word sentence without affecting the content.

 

Were there surprises when you got back some of your plain language summaries from review? Or were there discrepancies until both of you were happy with the result?

Well, sometimes when I review plain language summaries, I don’t see the comments from the subject specialist or the medical specialist or the clinical specialist or the researcher. I don’t see those comments. I may see the paper back again or the plain language summary back again once some of my comments have been incorporated. But we’ve also got patient reviewers and patient advocates who are involved in reviewing plain language summaries. And what surprises me more is some of their comments because actually we’re all patients. But when you’re writing for a patient advocate who is really very skilled at thinking always with the mind of a potential reader for this condition or this pathology or this disease or whatever, they see things that you just don’t see. And I always find their comments to be very, very helpful.

 

What can we as a publisher do to promote health literacy?

I think I didn’t say as much about health literacy as I could have done earlier. And I think, being able to make well-informed health decisions for yourself and for the people you have responsibility for, to take care of your body, to establish a healthy lifestyle, if you like, to prevent disease that being health-literate. But there are other things as well, such as understanding your current illness or you have somebody in the family with a current illness, and being able to work towards recovery and communicating with a primary care provider or specialist. Having a dialog, being confident to ask questions and having the knowledge that gives you the confidence to ask the questions about your condition or your family member’s condition.

Now, that’s where I think publishers come in because publishing evidence-based health information that’s presented in accessible formats, and by accessible I mean comprehensible. And it doesn’t have to be text, of course. It can be videos, audio like this podcast, graphic information, whatever. But it’s about making this information available to readers and making it accessible. I think that’s one of the major things that publishers can do to promote health literacy. And with regards to plain language summaries, of course, actively encouraging researchers to submit a plain language summary alongside their research. That’s also what a publisher like Karger can do.

 

What other players are involved when it comes to improving health literacy and what should they do?

There are so many people involved in this discussion of improving or raising health literacy standards. And it starts at the top with governments and policy makers and goes right down to family, schools, communities, child education services, employers, health insurance. In a country like Switzerland, health insurers have a huge role to play as well. Health systems like the NHS in the United Kingdom and health care providers are nurses, our doctors, the people that we go and see, our dentists, making sure that they’re aware themselves of what health literacy is and how to check for it in their patients. If a health care provider doesn’t know what health literacy is, they can’t recognize it in others. I think it would be very difficult to find anyone who doesn’t have some role to play in raising health literacy standards.

 

What do you expect how health literacy will develop in the next five years?

I think actually it’s a very exciting time for anyone who’s interested in health literacy. And there are many more people more interested than I am. I mean, people who devote their entire careers to health literacy, of course. But it’s an exciting time because there are an awful lot of ongoing initiatives, government initiatives, a lot of investment. Technology has absolutely changed the way that we can approach health literacy as well. We’ve got all manner of apps being written and promoted by healthcare systems, wearable devices, etc. Things like medical records being available online to the patient. Now, I don’t know how it is in Switzerland, but in the UK, for example, patients now have the right and they’re not all aware of this, but they have the right to access their medical records online. And patient rights to knowledge and the rights to access data that’s being held about them.

The patient-centered medicine is being talked about in ways that was inconceivable 20 years ago. So, I think it’s a very exciting time. I couldn’t tell you where we’d be in five years, to be honest with you. But I suspect many of us will be much more comfortable with technology and apps and monitoring our own health than perhaps our parents’ generation would have been.

And there is a key point here: We have more information than ever but we can’t understand it. But we’re taking steps. I mean, if you really wanted to, I’m sure you could have found an online site, make sense of your medical record or something. I know that they do exist. We shouldn’t have to go to those lengths. Isn’t that the point? And I think we can talk very much about health literacy as if it is primarily the responsibility of the patient and the education service and schools, etc., train people to be health-literate and it will be okay. But of course it isn’t because the other partner in this conversation is the health system itself. And I’m aware that different cultures have different attitudes towards patient-centered medicine. Certain cultures are perhaps a little bit more cautious about giving too much information to patients. They’re not quite ready for that amount of information overload as they see it.

But I come back to my point earlier about training medical professionals and medical systems and insurers and anyone who’s involved in the provision of medicine; training them to understand what health literacy means and the impact of poor health literacy. And if they are sensitive to health literacy, they can recognize it in others and they can look again at the material that they’re producing and think, you know: “Is this appropriate? Is this going to be comprehensible?” And if the answer is no, they find another way of imparting that information.

 

It was a pleasure talking to you, Catherine. Thank you very much for your time and your insight.

UK Disability History Month 2022: An Interview with Piers Wilkinson (Diversity and Ability)

This year’s UK Disability History Month is held from November 16 until December 16, 2022, and features the theme “Disability, Health and Wellbeing”. We spoke with Piers Wilkinson from Diversity and Ability (D&A) about the awareness month, as well as the history and future of disability and what has been achieved so far.

Piers Wilkinson is the former National Union of Students (NUS) Disabled Students’ Officer, and now supports the work of D&A as the Policy and Campaigns Lead of the Inclusive Education Team. D&A is a UK-based social enterprise led by and for disabled people, i.e., 85% of their team self-identify as disabled or neurodiverse. Their aim is to support individuals, organisations and social justice projects to create inclusive cultures.

Note: The statements and opinions contained in this podcast are solely those of the speaker.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Waldenström Macroglobulinemia: Rare, But Treatable. An Interview with Dr Shirley D’Sa (Hematologist)

Waldenström macroglobulinemia (WM) is a rare blood cancer that usually progresses slowly. WM can be diagnosed by blood tests, bone marrow biopsy, and scans, and there are a range of treatment options available.

To learn more about WM, we spoke with Dr Shirley D’Sa. She is a Consultant Haematologist and Honorary Associate Professor at University College London Hospitals NHS Foundation Trust in London, UK. Furthermore, she is the author of the booklet “Fast Facts for Patients: Waldenström macroglobulinemia”, which is freely available online.

Note: The statements and opinions contained in the video and the podcast episode are solely those of the speaker.

Video Interview

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

What is Waldenström macroglobulinemia (WM)?

Waldenström macroglobulinemia, which is abbreviated WM, because it’s a very long pair of words, is a condition named after a Swedish physician called Waldenström. He described in 1944 thickening of the blood by a plasma protein. And that’s where the macroglobulinemia comes from. Globulin is a protein and macro is big. If we deconstruct that a little bit, what it is in real life, if you like, is the consequence of a buildup of lymphoma cells known as lymphoplasmacytic lymphoma. They tend to build up in the bone marrow for reasons that we do not understand. We do not know the trigger. They are part of the immune system and they are very well known for producing antibodies, so-called IgM antibodies. And that is their signature and that is often how the disease is diagnosed. So, basically Waldenström’s or WM is the presence of this lymphoma, called lymphoplasmacytic lymphoma, with the production of a monoclonal or paraprotein called IgM.

 

Can you tell us what causes WM?

There’s no clear answer to that question. In the vast majority of people, we have no idea what causes it. There are some familial clusters of Waldenström’s or diseases that are similar to Waldenström’s in family members. But this is not a strong association. There is no single gene inheritance pattern or anything like that. Clustering is something that’s being looked at by some researchers to look at the genetics. But as always, when you have clustering in families, the question is, is it due to the fact that families live in the same surroundings, or is it due to the fact that the families have a similar genetic background and makeup?

So, the main way I look at Waldenström’s is that it’s a disease of the immune system, and we must remember that our immune systems are busy working for us from the time we are born and throughout our lives. And so, when we encounter various stimuli, whether it’s an infection or some strange chemicals, and I have to say there are more and more of such chemicals in the world than ever before, through industrialization, etc., the immune system gets very busy in shielding us against things, in mounting a response, in sort of setting up a way of protecting us, and in the case of infections, finding a way to remember the infection that’s been before so that if we encounter it again, it can get ready and fight back, so-called memory. And that is what our immunity is.

Now, in conditions involving the cells inducing these immune reactions and antibodies, sometimes the control mechanisms don’t go quite right. And when you have an immune response instead of a very tiny battalion of cells being produced, which then retreat back to the bone marrow or the lymph nodes and stay quiet, they remain somewhat visible and give themselves away, usually through the production of a protein. And so there is this lingering of an immune population, and that, I believe, is what leads to Waldenström’s and similar conditions. Because what happens is this population of cells lingers around and then it may in fact be given a boost from time to time by some other stimulus. And eventually there is a gradual buildup of the population. So, that, I guess, is the way I look at it in a simple way.

The actual trigger we don’t know. It’s hard to tell that. But again, a lot of research is going into looking to what is the so-called cell of origin. Why does this happen? Who does it happen in? But for the most part, when you see a patient who’s developed it, we can think of no cause. We can identify no cause.

 

What are symptoms of WM?

I always say that Waldenström’s is a rather talented disease. And that is because it has a buildup of the lymphoma cells in the bone marrow and the lymph glands and maybe the spleen, which is a spongy organism, an organ in our abdomens, which is part of the immune system and helps filter out certain bacteria.

The buildup of cells in the bone marrow primarily tends to cause a gradual decline in normal cell production. And the bone marrow is responsible for producing red blood cells, white blood cells and platelets. And these cells function every day to help deliver oxygen, fight infections and clot the blood in case of breaching of the blood vessels, respectively. So, when these cells decline in numbers, they obviously don’t do the job that they are meant to do properly. And so one of the very common features of Waldenström’s is fatigue. Because when you become anemic, you are having less oxygen delivered to your tissues, especially when you exert yourself, and therefore there is more energy needed to do your normal tasks. And that is a very, very common feature of Waldenström’s. Fatigue is very complex of course, because we, many of us, feel fatigued anyway, even if we don’t have Waldenström’s, because life is busy and we are doing all kinds of things. So, it is very difficult to distinguish sometimes what is what, but we do try and correlate fatigue with laboratory parameters when someone is diagnosed with Waldenström’s.

The other main feature of Waldenström’s is the consequence of the protein that I mentioned. So, the IgM paraprotein is, what is it exactly? Well, it is an antibody, and antibodies are meant to fight infections. And so, you know, you might say, well, I’ve got more of these antibodies, isn’t that a good thing? Unfortunately, when copies of the same antibody are made in such a disease, they are not useful antibodies. They are sort of rather redundant. They’re being produced erroneously and the consequence of that is primarily twofold. One is that there’s less attention focused on normal antibodies, so the abnormal ones are produced at the expense of normal ones. People often have a deficit in their immune systems and may develop infections, because their bodies are producing too much of the abnormal protein.

The other consequence is that this antibody can seek out targets within the body, which is actually part of the person, but it thinks of it as foreign and begins to attack it. So-called autoimmune activity is a big problem in Waldenström’s for many patients. Typical targets include sometimes the blood cells, to be honest, so the red cells can be targeted. You can get an autoimmune hemolytic anemia where red cells are broken down. Platelets can be targeted, and that is resulting in low platelets through an immune mechanism. Nerve cells can be targeted, causing nerve damage and so-called neuropathy. And that can lead to a variety of symptoms such as tingling and numbness and weakness and poor balance. And there are other features of paraprotein that can be problematic, such as they form little collections if the temperature is cooler in a condition known as cryoglobulinemia.

So, there is a range of antibody-mediated symptoms in Waldenström’s and for the most part, these symptoms build up quite gradually. They may creep up on a patient without them realizing. And so people may feel a sense of chronic ill health without knowing what it is. Or there may come a point where a tipping point is reached and people then resent their physicians. And sometimes piecing it together can be difficult because it’s a rare disease, and not all physicians immediately think this must be Waldenström’s. They will go through a diagnostic process and, you know, so it can produce a variable range of symptoms. And that’s what makes it sometimes tricky to deconstruct and understand. But the important thing is for someone to listen to symptoms from the patient and go through in a rather systematic way in the presence of, say, anemia and paraprotein, so that we can make sense of what is affecting the patient.

 

With a range of different symptoms, how is WM diagnosed?

Owing to the fact that Waldenström’s is primarily a bone marrow disorder, once we have clues of its presence through the blood tests, so, finding the paraprotein level, the IgM exceed a higher level, we do need to look then at the bone marrow, because this is where the action is taking place. The cells are building up in the bone marrow and that therefore requires a bone marrow biopsy. And this is taken from the back of the pelvis under local anesthetic, using a needle. In fact, two needles are used in sequence after anesthetic is placed into the soft tissues. One needle is used to remove liquid bone marrow, which is smeared onto a slide. This is then examined under the microscope after some stains. The result can be available even the same day, to be honest. Some of the liquid marrow is typically sent for something called flow cytometry, which is when special antibodies are applied to the cells, to try and identify them in more detail. And this can give rise to the sort of characteristic signature of Waldenström’s, using these markers.

Furthermore, liquid marrow can be sent for genetic analysis to look at the molecular signature of Waldenström’s. And in more than 90% of patients, there is a mutation of a gene called MYD88. And this is not entirely exclusive to Waldenström’s. Waldenström’s is a disease in which it is most prevalent as a proportion of patients. And this mutation happened, this gene is, what it does by becoming mutated is to give the Waldenström’s cells a survival advantage, and that’s what makes them grow and develop and accumulate. So those sort of markers are also looked for in a bone marrow.

But, in my opinion, actually a very important part of the bone marrow is the biopsy, and that is a small core of bone taken with the second needle. The core of bone looks a bit like the lead of a pencil, but not as long, I assure you. It’s usually about a centimeter long. This takes a bit longer to analyze, because the bone needs to be taken away, it needs to be decalcified, if you like: dissolved, using chemicals. That takes five or seven days, after which the sample can be sliced in the laboratory and then analyzed using again special stains. What this tells us is, it gives us more of a picture of the bone marrow, because the sample is bigger than the liquid. And you can see an architectural view of that section, to see how much are these sort of lymphoid cells? How many are plasma cells? Because, as I mentioned earlier, Waldenström’s is a lymphoplasmacytic lymphoma, there’s a mixture of these cells. It also gives us a percentage as, you know, as opposed to the normal cells. And that is very helpful as a baseline as well as to confirm the diagnosis.

So, that is, I guess, fundamentally making the diagnosis. But in order to understand the extent of the disease, it’s also important, especially before treatment, to do a CT scan of the body, which is a whole-body, a cross-sectional scan, which is based on X-rays. And this tells us to what extent, if at all, lymph nodes and the spleen is involved. This is important to know before treatment, because in the future one can then compare the results of the treatment by repeating the scan. So, that is really the way diagnosis is made. Of course, I’m now assuming that blood tests have already been taken. A full blood count, which gives you the hemoglobin, white count etc., is a very routine test done by many doctors, as are kidney tests and liver tests. Measuring the protein, the paraprotein, is not something done routinely. It has to specifically be done using something called protein electrophoresis. And furthermore, measuring the paraprotein level is also a specialist test. So, that wouldn’t be done by family doctors typically. It would be done in the hospital setting.

It’s a question of putting together the story and trying to move towards a diagnosis, if it’s suspected, and getting all these tests done. Once the diagnosis is made, then a few additional tests are done to try and identify what’s called prognostic factors, things that might predict the way the disease might behave going forwards. But that doesn’t really tell us how to treat patients. Primarily, we treat patients based on their symptoms, and we obviously follow guidelines too, which are based on evidence, as far as possible, as to how best to treat patients taking account of existing and newer therapies.

 

What kind of treatment is currently being offered to help patients with WM?

For many, many years there has been a range of chemotherapy drugs in the traditional sense. Treatments that are designed to attack the DNA or the genetic material of these cells. These treatments which include drugs like cyclophosphamide, chlorambucil, bendamustine, they’ve been around for variable periods of time, but actually quite a long time overall. They’ve been very well tried and tested. There are some other agents that were used more in the past, such as fludarabine, which are not ineffective, but have been or are less used because of their toxic effects. This traditional group of treatments are very effective in Waldenström’s, and they are still in use. The use varies from country to country depending on what is available. And they are typically used in conjunction with antibodies that target B cells, and the one that’s most commonly used is called rituximab. And that targets something on the protein, on the surface of the cell called CD20, so they are called anti-CD20 antibodies.

And in current times, chemotherapy, a chemotherapy agent in conjunction with rituximab forms the backbone of therapy for many patients’ frontline when they’re first diagnosed and need treatment. And such treatments are usually given for a fixed period of time, spanning 4 to 6 months, in which the treatments are given probably in monthly intervals or every three weeks or so. You can read more about these individual components in the booklet, because there’s quite a lot to take in. The other groups of therapies are what are called biological agents. Again, there’s an increasing range of these kind of treatments, and they are extremely clever treatments, because they’ve been developed on the back of biological discoveries about how cells actually function.

One example of this is something called a proteasome inhibitor, which is, an example, bortezomib. This is something that is not a chemotherapy drug, but is used and very effective. What it does is, it sort of stops the cells from using their systems of garbage disposal, and by blocking that, the cells simply cease to function after a while. Such treatment is also given in conjunction with rituximab, sometimes even with chemotherapy agents as well. So, when you combine drugs together, they work in their own way, but in conjunction with each other. And then you can get a net benefit. Then there’s a newer group of drugs called the BTK inhibitors, so-called as it stands for Bruton’s tyrosine kinase inhibitor. And these drugs are based on the fact that all cells, and immune cells particularly, you know, this is a very important factor for immune cells, communicate with the outside of their environment, using what are called signaling molecules.

If you think about a cell, it’s like a sort of a ball and within it is a smaller ball. And in the smaller ball, the nucleus, that’s the genetic material, that’s the brain of the cell that tells the cell what to do. If you think about the cells, the immune cells, as members of an army, they don’t act alone. They have to communicate with what’s going on around them. They get signals about intruders. They need to know who’s the good guy, who’s the bad guy. So, the only way they can do that is by communicating from the nucleus to the surface of the cell through these signaling pathways. And in diseases like Waldenström’s, some of these signaling pathways are excessively expressed, which leads in the first place to the cell being slightly out of control of its normal processes of controlling growth. By targeting some of these proteins, and BTK is one of them, we can try and switch off that advantage and beat the disease.

And really speaking, this is a huge step forward. It’s very different to chemotherapy, because the mechanism of action is different. It’s given in a different way: It is taken by tablet or capsule on a daily basis, on a continuous basis, as long as it’s effective. So examples of this include ibrutinib, acalabrutinib, zanubrutinib and pirtobrutinib. And now again, as these kind of treatments evolve, and the sort of newer versions of them, if you like, are tweaked to try and improve on them and improve on them, to make them less toxic, to overcome some of the resistance that can develop. And where we are with them is that they are proven to be very effective in this disease and many other lymphomas. But we’re still working on how best to use them, when to use them, whether we combine them with other treatments.

 

Are there any clinical trials about WM, and what do they involve?

There are many trials ongoing in Waldenström’s, which is fantastic, given the rarity of the disease. And as time goes on, we’ll have a better idea of how these drugs are best used, how to limit some of the side effects that we see coming through, and how to perhaps use them in a way that’s not continuous forever, but used perhaps for a limited period of time.

And that really brings me on clinical trials. They are very important in making advances in therapeutics, because what they do is build onto previously gathered experience and then develop that further. Many centers do run clinical trials. They’re not available in all hospitals, more so in a disease which is rare like Waldenström’s, because you do need a number of patients within the center to make the trials justifiable for that center. So, if trials are not being run in your hospital, you can ask your doctor about a center that’s nearby that perhaps has trials, because it may be that that is something very much worth your while in participating in, because you may benefit from a new therapy, it may give you different options. And at the end of the day, what would happen is you get information about the trial, what it involves. You get written information in great detail. You’d be able to assess that. The doctors would explain to you pros and cons of being inside the trial, and you would make the decision yourself, with their help, so that you can then decide whether this is something that would work for you.

Trials are really, really important, trials that are running at the moment. A number of them are actually on; again, this varies from country to country. And there is a list of trials on various websites, including clinicaltrials.gov that is a slightly technical site, but if you were to look on them and want further information, then you should seek that from patient advocacy organizations or indeed your doctor. Because they can sort of translate some of the jargon and help you understand where are the trials available, whether you might be eligible, etc. So, I would suggest that that is what you do, because if I mentioned one or two trials now, then before long, the interview will be out of date. But I assure you that there are a number of ongoing trials of new therapies. It’s a very positive situation now in the development of WM treatments. And I advise you to and encourage you to get involved, ask questions and gain some knowledge about the disease so that you are empowered to live with it well.

 

Many thanks for your time and for the interview.

Check Your Breasts – Save Your Life: An Interview with Sonja Dinner (The DEAR Foundation)

The good news is: The earlier breast cancer is detected the faster it can be treated, which means that cure is more likely. For Breast Cancer Awareness Month 2022 we spoke with Sonja Dinner from The DEAR Foundation to learn why regular breast checks are so important, and how the breast cancer awareness campaign “DearMamma” encourages women worldwide to check their breasts regularly.

 

Please tell us about “DearMamma”. What is the goal of the campaign?

The aim is to reach one billion people and inform them about early signs of cancer. We want to enable people – mostly women, but also men – to take care of themselves, to know about early signs of breast cancer and to prevent unnecessary deaths. It takes only 3 to 4 minutes a month and it can potentially save your life. Breast cancer can be deadly, but the good news is that the options for treatment are very good – if we are early enough.

 

Training and awareness program run by Dr. Biniyam Tefera in Adama, Ethiopia (source: The DEAR Foundation)

Training and awareness program run by Dr. Biniyam Tefera in Adama, Ethiopia (source: The DEAR Foundation)

 

How did you come up with DearMamma?

On my travels I got to know many people who lost a mother, sister or wife to breast cancer. And also I lost, among many other people, a very dear friend. I promised her that if ever I could do something against breast cancer, I would do all I can to prevent such fates and use the advantages of technology. Since I am coming professionally from IT, I waited desperately for the internet to have enough bandwidth to transport pictures, film and speech and for practically all women to have access to a smartphone. And then an app is the best tool to inform, instruct and remind women around the world to check themselves monthly.

 

What does it do?

You get information about early signs of breast cancer like lumps or bulging of the skin, to only mention two. You can watch a video instruction or use graphics to be guided through the self-check step by step. You can even take notes and set a reminder for the next self-check. And oncologists and religious leaders encourage the women to do exactly that.

 

What are the benefits of the DearMamma app?

Oh, there are so many! First of all, it’s free and it’s available in 11 languages: German, English, French, Spanish, Arabic, Hebrew, Farsi, Urdu, Bengali and Chinese. For illiterate people or people with poor reading skills, we included a read aloud function. The app talks to you in your mother tongue!

Further, it has no advertisements. Once downloaded, it works offline, and we collect no data. The information is on your phone and stays there.

 

Impression from the "Frauenlauf 2022", for which DearMamma acted as the main charity partner. 625 women took part for DearMamma (source: Alphafotos.com)

Impression from the “Frauenlauf 2022”, for which DearMamma acted as the main charity partner. 625 women took part for DearMamma (source: Alphafotos.com)

 

Why are self-checks important?

Well, first it’s important to know your own body. How do my breasts feel and look like? Only if we are familiar with “our normal”, we can detect changes early. Second, a regular visit to a gynecologist is important wherever possible. But of course many women around the world do not have access to such health services.

In the meantime, so many things can develop in the breast. I don’t want to spread panic, but I’ve heard so many stories of women who detected lumps themselves. One particular story comes to my mind where someone was cleared by her doctor and then detected a lump only ten days later. It turned out it was an aggressive tumor. Luckily, she was early enough and is healthy again.

1 out of 8 women will develop breast cancer in their lifetime. We can’t change that number, but we can try to change how early a woman detects something.

Oh, and you know what is equally important?

 

No. What?

To do the self-checks correctly. It has nothing to do with gently caressing the skin. You really have to do it the right way and go deep into your breast tissue. Of course it depends on your breast size, but you should feel your ribcage. And don’t forget to check the armpits as well.

 

What are the next steps for the campaign?

Well, we have many ideas (laughs). We have many successful collaborations that we want to extend further. For example in Jerusalem and Palestine or in Ethiopia. The local nurses, doctors and health workers do a wonderful job and raise awareness in gatherings, group discussions, events and much more.

But what would also be a brilliant next step is if we could bring more doctors and gynecologists on board. They could use our app and material for patient education and inform patients about self-checks. Of course, the doctor’s visit is still mandatory if available, but if we could work together, we could detect signs earlier and gain valuable time.

 

“DearMamma” is a project of The DEAR Foundation. Can you tell us more about the goals of the foundation?

The DEAR Foundation was founded in 2006 and is religiously and financially independent. We handled over 1,000 projects all over the world and focus on health, education and poverty alleviation. DearMamma is one of our biggest projects. In all our projects we want to empower people and support them to be independent at the end of the day.

 

Thank you very much for your insight!

You are very welcome! And don’t forget to download the app today.

 

 

The best thing about the DearMamma app:

  • It’s absolutely free.
  • Once downloaded, the app is fully functional even offline.
  • The entire text in the app can also be read aloud.
  • Personal data is only stored on your own device. DearMamma does not collect it and does not have access to it.
  • Various settings according to own needs possible (e.g. skin tone, security code).
  • The app is available in 11 languages (German, English, French, Spanish, Arabic, Hebrew, Farsi, Urdu, Hindi, Bengali and Chinese).

COVID’s Ugly Progeny: Long COVID. An Interview with Emily Taylor (Vice President of Advocacy and Engagement at Solve M.E.)

Since late 2019, people all over the world have heard of COVID-19, or coronavirus. Since then, it has been a part of our lives, dominating the news and resulting in a growing number of infections and deaths worldwide.

Meanwhile, we know more about the virus, its ways of spreading, and the symptoms it causes. In this context we also learned about a new development: Long COVID. People who have had COVID-19, and are on the mend, start to experience similar symptoms once again, while their test results are negative, and their platelet counts are normal.

To learn more about Long COVID, we turned to the Long Covid Alliance, a network of patient advocates, scientists, disease experts, and drug developers. They have joined their collective knowledge and resources in order to educate policy makers and accelerate research to transform the understanding of post-viral illness. We spoke with Emily Taylor, Vice President of Advocacy and Engagement at Solve M.E., co-founder of the Long Covid Alliance.

Note: The statements and opinions contained in the video and the podcast episode are solely those of the speaker.

Video Interview

Podcast Interview

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Transcript

Could you please say a little bit about yourself and about Solve M.E., and explain how Solve M.E. and the Long COVID Alliance are connected?

I am a caregiver for my mother who is a patient with myalgic encephalomyelitis/chronic fatigue syndrome, or ME/CFS. She’s been sick since 2008, and she got sick from a virus. So, I’ve lived the world of a post-viral illness patient, I’ve walked in those shoes and been to the many, many doctors, experienced the challenge of finding medical care, finding support services, and that’s what brought me to this work. Before my mother got sick I worked in Washington DC on Capitol Hill, so I decided to take my skill set in policy and government and apply it to changing the experience of people, like the horrible experience my mother has had and continues to have.

I came to Solve M.E. in 2015. I love my job. I’m very lucky that I can bring my passion for change to my work every day, and Solve M.E. is a national non-profit for ME/CFS and post-viral diseases, so I was a post-viral disease expert before the pandemic broke out. And we decided we really needed to work together with all of the other organizations and drug developers, and as a non-profit we wanted to reach across to the for-profit world. We wanted to reach across to the government world. We wanted to reach to individual patients and use their experience and stories to help fuel our work.

So, we co-founded the “Long COVID Alliance” with two other organizations: the “COVID-19 Longhauler Advocacy Project” and the “Global Pandemic Coalition”. These two organizations joined together with us and in about six months of working together we decided we needed to form this alliance. We started with 21 different organizations, mostly non-profit health organizations, and we now have over 1,000 members from all over the world, from all over different subject matter experts. People who are doctors, people who are drug developers, researchers, regular patients who are just trying to find help. We have everybody, and that’s the whole purpose of the “Long COVID Alliance”. It’s to bring everyone together to work on our common goals collectively, and what we’ve accomplished so far has been a lot.

We were one of the organizations that were lobbying congress for additional research funding, and so we were part of the team that helped secure 1.25 billion dollars in research funding from the US Federal Government which has now gone to the National Institutes of Health here in the United States. And we were also helpful in getting several bills introduced in Congress that are still – fingers crossed – making their way through. We’ve also been an advisory force that has been helping researchers and clinicians connect with patients and providers to learn more and help share information about how what works for Long COVID patients, what doesn’t work for Long COVID patients, what are red flags, if you see a patient experiencing certain types of symptoms what should you do. All of that information is what we help share among our thousand members.

 

Could you please explain what Long COVID is? What are the causes and what are the main symptoms?

Long COVID is an umbrella term. It describes a lot of different post-illness or post-acute infection illness symptoms and experiences. So, no one person with Long COVID is the same as another person with Long COVID, and what we’re discovering is that we really need to find different treatments for all the different experiences and different types of Long COVID. So, I like to refer to Long COVID as a little bit of a rainbow with a lot of different colors and flavors in that rainbow.

For example, Long COVID includes people who have Post-ICU syndrome, people who were hospitalized in the emergency room and/or in the ICU, the intensive care unit, and have damage as a result to their system from that stay. There are people who have damage to their hearts, to their lungs, to their liver, to all sorts of organs from the actual experience of COVID. There are also people whose bodies have changed, fundamentally changed, after experiencing COVID, and they are now experiencing something like a post-viral infection or post-acute viral infection, which are these post-viral illnesses we talk about. This includes mast cell activation syndrome, dysautonomia, forms of dysautonomia including POTS, which is postural orthostatic tachycardia syndrome.

And, unfortunately, in about 46% of patients with Long COVID, we’re seeing ME/CFS, which is myalgic encephalomyelitis/ chronic fatigue syndrome, which is what my mother has. And that’s the area that I’m particularly interested in because I have the most experience in that. But we’re seeing people come down with a range of these symptoms, sometimes multiple syndromes at once. All of them, what they have in common is they’re triggered by an initial infection, some sort of a systemic shock, like getting COVID-19, that changes the way the body operates afterwards, and that can include over 200 different documented symptoms.

Long COVID is a collected experience of illness that follows after a COVID infection. And our job is to peel the different types of those illnesses, to put them together, to understand them, to research them and ultimately get treatments and cures out there faster so that these folks can get better. The one thing I will add to this about why this is such an urgent issue, why are we so fervent to do this quickly, is because what we know from other post-viral illnesses before the pandemic, is that there is a timeline, and when people get the virus, it sort of starts a ticking clock.

And in about four years’ time after a virus, if they experience these post-viral symptoms, this sort of starts to become permanent. And we can actually see fundamental biological changes in people’s bodies from the early stages to the mid stages to the end stages. And there’s no real recovery after that point. The recovery rate is only about 4% after that point. So, we’re really urgent. We feel this time pressure because we’re already two years into the pandemic. And there are people who have been sick for two years already. And we see that we have 18 months to two years to get them a cure or a treatment, or they might stay sick for the rest of their lives.

 

You just mentioned body changes. Are there mental changes as well?

There can be, but what I would caution to say is that the physical changes drive the mental changes. The way I’d describe it is if you woke up one morning and you were suddenly disabled, you suddenly couldn’t walk, you suddenly couldn’t think, you suddenly couldn’t do your job; that would change you. And so I like to talk to patients and say there’s a bit of a mourning process, like the way you would mourn the loss of a friend, the loss of a loved one, the loss of a pet.

You have to mourn the loss of your functionality, that you are no longer the healthy person you used to be, and you have to come to terms with that. And that is incredibly hard. Depression and anxiety and other mental health comorbidities can come from that experience. And it’s made even worse. We were chatting a little bit before the call about how many doctors and many people don’t believe this is real. So, could you imagine if you woke up one morning, you’d lost the ability to walk and everybody around you was telling you: “Well it’s all in your head, you should just be able to walk, just try harder.” And how do you internalize that and how do you live in that life?

There is absolutely a mental health component of this experience. But, in my opinion, that mental health struggle comes from being sick and not able to get well, and not being believed that you’re sick, and the damage that causes definitely has a mental health impact. But it does affect the brain. We don’t know how yet. It’s very possible that this virus is changing people’s brains fundamentally. And we’ve seen presence of the virus in the brain through postmortem studies and live studies with biopsies. We know that the virus gets into the brain, and we still don’t know what it does there when it gets there.

 

You said that no one person with the COVID infection or with Long COVID is the same. So, what does this mean for treatment? How is Long COVID treated at the moment? Is there a treatment?

There is no FDA-approved treatment. There is no single cure. Right now, it’s a bit of a scattershot approach or a shotgun approach with throwing a lot of different things at these problems to see what works. One thing that we know for sure is really helpful is what we call pacing. It’s a lifestyle change or a treatment mechanism in which you wear a wearable or another mechanism to monitor your body. And when you feel your heart rate starts going up, when you start feeling bodily changes because of the activities you are doing, you stop, you rest and you bring yourself back to baseline before you exert yourself again.

And that’s really important because what we’ve found is with patients that try to push past their limits, patients that are just “I don’t care if I’m feeling bad, I’m going to power through and I’m going to suck it up.”, those patients get worse in the long term. They tend to do, they tend to have poorer outcomes. They tend to get sicker faster and sicker for longer. And as opposed to people who stop, who rest, who then pace their energy levels, despite how bad they’re feeling, and really stay within what their body is telling them is their energy limit now, those folks tend to have better long-term outcomes. So, that’s one thing we can tell so far is pacing; resting when your body is sick is so important and key.

 

Is there research into drugs as well?

Yes, there are quite a few clinical treatment options that are being researched. Some are even in phase III clinical trials, but nothing has definitively come out yet. One drug that is showing a lot of promise is a drug called Ampligen that is not yet approved for treatment in any other country except Argentina. It’s not because it’s not safe. The drug has been shown over and over again to be safe. The challenge is proving it to be effective against these particular illnesses, and in early studies, it showed that about 40% of people did respond very well to this drug. But more testing is needed. It’s still not out. So, that’s just one of many I could talk about. There’s also low-dose naltrexone. There’s a couple of other treatments that are being explored, including hyperbaric oxygen chamber treatments. There’s lot of different hope out there, but none of them has passed the finish line to be an approved treatment yet.

 

What does Long COVID awareness mean for people with other chronic diseases with viral triggers? For example, myalgic encephalomyelitis and chronic fatigue. Do they profit from this new awareness?

Absolutely. We have a phrase or a saying that we say “A rising tide lifts all ships”, and this rising tide of awareness, of financial resources, of support is lifting all of the post-viral illnesses together. And I will say, one of the silver linings of this crisis that I hope we take away and keep with us as we move forward past it, is the fact that all of these illnesses, Long COVID has brought us together. Before the pandemic, I think, there was a lot of siloed research in this area. People looked at just ME/CFS or just POTS or just dysautonomia, and now these researchers are starting to compare notes, are starting to work together. Us in the patient advocacy community are starting to work together, to combine our common stories and then pool our common strengths. And that is really wonderful. We’re making great progress, and I think we’ve accelerated progress, thanks to all of us coming together. And that I really, truly believe is going to get us cures faster because we are pooling our resources and working collectively towards a common goal together.

 

Do you think that there will be a cure for Long COVID in the future?

Truly, we have several different major hypotheses about what causes this illness. Is it a latent viral load? Is it inflammation? Is it the virus in the brain causing trouble there? We have a lot of different theories and we’re together checking the boxes about those theories, each one together, and using our common resources to do it faster. And obviously, we still need more. We’re not there yet, but we’re on a path where I can see a light at the end of this path that involves full druggable targets and FDA treatments, and I will say this is a call to my brothers and sisters and friends in the pharma industry. We need you. We need your partnership. Some pharma folks are really getting involved. But no one, no one brings a drug to market like the American pharmaceutical industry. It is a massive Goliath. And when they pivot – and they’re starting to -, when they pivot to truly invest in this issue, we will have all the components we need to get something out fast. So, we’re really getting close. And hopefully soon enough to help. There’s so many millions of people who got COVID and so many millions of them who still struggle with symptoms. And that’s really what it all comes down to, is making sure those people get their lives back.

 

Thank you very much for the interview, Emily.

World Cancer Research Day 2022: An Interview with Professor Datin Paduka Dr Teo Soo-Hwang (Cancer Research Malaysia)

In 2020, more than 18 million individuals were diagnosed with cancer and nearly 10 million died of the disease, more than half of whom were Asians. The good news is that cancer survival has improved because of advancements made through the development of new therapies, and the development of new ways to detect the cancer early (when cancers are more curable) and to prevent the disease. The bad news is that the majority of research has been conducted in North America and in Europe, where the population are mainly of European descent, and the data does not always apply to the Asian population. The reasons for this are different genes, lifestyle factors and environmental factors – all of which affect the risk of disease and the response to treatment.

Cancer Research Malaysia is on a mission to change that. By conducting research in the Asian population, they are developing new ways to prevent cancer, to detect it at early stages, to treat it more effectively, and to improve survivorship among Asians.

“Support Research to Prevent Cancer and Catch It Early” is the 2022 motto of World Cancer Research Day, which is commemorated on September 24 each year. On this occasion, we spoke with Professor Datin Paduka Dr Teo Soo-Hwang who is the Chief Scientific Officer at Cancer Research Malaysia and Principal Investigator of the Malaysian Breast Cancer Genetic Study (MyBrCa), the Malaysian Ovarian Cancer Genetic Study (MyOvCa) and the Malaysian Mammographic Density Study (MyMammo).

 

Prof. Teo, can you please tell us what the above-mentioned studies are about and what the results are? You are also the driving force behind ARiCa, the Asian Genetic Risk Calculator. Can you please tell us more about this new tool, too?

All of these studies are cohort studies where we invite Malaysian women who have either been diagnosed with cancer or who are healthy and unaffected by cancer, to contribute to research to help us understand the lifestyle and genetic factors that are associated with breast and ovarian cancers. Before we started this in 2003 (for breast cancer) and in 2008 (for ovarian cancer), there were very few studies in the Asian population, and doctors had no choice but to use data from European women to provide guidance to Asian women. Because of the Malaysian cohort studies, we now know that 1 in 25 breast cancer patients and 1 in 9 ovarian cancer patients have inherited an altered version of the breast cancer predisposition gene, BRCA1 or BRCA2.

Using this data, we have built a web-based tool (called ARiCa or Asian Genetic Risk Calculator) that enables doctors to determine a woman’s likelihood of inheriting this gene. We are using this to improve access to genetic testing that could guide more appropriate treatment for the patient, and open up the possibilities of cancer prevention among family members. Significantly, similar tools which have been developed for European women have an accuracy of 90% in European women but less than 20% in Asian women, whereas ARiCa has an accuracy of >80% in Asian women – so, an important take-home message is that cancer research has to represent the diverse populations globally in order to benefit people of different ancestry equitably.

“There were very few studies in the Asian population, and doctors had no choice but to use data from European women to provide guidance to Asian women.”

In addition, building on the Malaysian studies, we led a study involving more than 45,000 Asian women living in more than 10 different countries and identified a new way of accurately predicting a woman’s risk of breast cancer. Today, all women are told to attend mammograms regularly from the age of 50, but we know that only a small proportion of these benefit from screening. Using this tool, we could potentially help women understand whether they are in the group that are at higher risk and benefit from screening, or they are at lower risk – this has not been possible previously, and we hope that this can transform the early detection possibilities for Asian women.

But being able to accurately identify women at higher risk of disease is only part of the solution – we are also working on ways to prevent cancer in these individuals. We have recently completed a study examining whether drinking 2 glasses of soy a day can reduce the risk of cancer in older women (those approaching or undergoing menopause), and a current focus is to examine how the milieu of female hormones in Asian women can be balanced to reduce their risk of breast cancer.

“Cancer research has to represent the diverse populations globally in order to benefit people of different ancestry equitably.”

You and your team have also created the largest dataset of Asian breast cancer genomic maps. What is the significance of this dataset?

The genes that we inherit from our parents are present in every single cell in our body and these influence our risk for different cancers. Some of these genes are altered when a normal tissue develops into cancers, and these genetic changes (also called somatic or cancer-specific alterations) can determine which treatments will work to cure that cancer. Previously, the study of cancer-specific alterations was only available in women of European descent – imagine that in 2015, only 2% of the studies were in Asians!

We set out to characterize the cancer-specific alterations in Asian women, and in 2020, we were able to increase the global data in Asians from 2% Asian to >20% Asian. Using this dataset, we showed that although Asian breast cancers are generally similar to that in European women (which means that treatment options are mostly the same), there are some significant differences. First, Asians are more likely to develop an aggressive type of breast cancer (called HER2-positive breast cancer), Asians are more likely to have alterations in a critical controller of cellular proliferation called TP53, and Asians are more likely to have active immune systems within the tumor.

Taken together, these data show that there are subtle differences in Asian breast cancers that could impact the treatment of cancers in Asians, and these could not have been predicted by just looking down a microscope – we needed to do the genetic and genomic studies to uncover these findings.

“Data show that there are subtle differences in Asian breast cancers that could impact the treatment of cancers in Asians.”

Another achievement of you and your team is the identification of biomarkers which are currently being tested in clinical trials. Could you please explain what the significance of biomarkers is? Will the results of these clinical trials influence the treatment of cancer?

Previously, cancers were treated according to the organ in which they occurred because doctors and scientists thought that all the cancers in the same organ arise in the same way and therefore respond to the same treatment. We now know that this is not the case – for example, based on genetic and genomic studies, we now know that there are at least 10 different types of breast cancer, and treatments that work in one type of breast cancer do not work in other types.

To distinguish these, we use “biomarkers” – signals from the cancers that tell us what type of treatments to use. Significantly, because of the Malaysian Breast Cancer Genetic Study, we have developed 2 new biomarkers that could be used to choose treatments. The first is a gene that predicts the response to immunotherapy in patients with aggressive breast cancer, and the second is a biomarker that predicts the response to a new form of targeted therapy in patients with aggressive breast cancers.

We are now testing the accuracy of these biomarkers in predicting treatment response, and as part of the clinical trials, patients in Malaysia are receiving new treatments that they would not previously have had access to. If the trials show that the biomarker does indeed accurately predict response to treatment, then in the future, all patients with the aggressive breast cancers will be tested with these biomarkers and given treatments that can save their lives. This is the focus on precision medicine – to develop new ways of treating cancers based on the understanding of the precise type of cancers, and the studies we are doing are making an important contribution to precision oncology in Asians.

“Because of the Malaysian Breast Cancer Genetic Study, we have developed 2 new biomarkers that could be used to choose treatments.”

What are future research projects of you and your team?

Our goal is to save lives through impactful research in Asians. For ARiCa (Asian Genetic Risk Calculator), we hope to roll out this web tool to improve access to lifesaving genetic testing throughout Asia and to incorporate other features to further improve the accuracy of risk calculations. For genomics, we hope to continue to accelerate the development of treatments for Asians through the development of more biomarkers.

These are just a snapshot of some of the research at Cancer Research Malaysia. We have 3 pillars – first, to accelerate the development of new therapies, with a goal of bringing 10 new treatments to clinic by 2030; second, to accelerate the early detection and prevention of cancers, with a goal of 10 new screening/prevention methods to clinic by 2040; and third, to close the care gap between the rich and the poor, with a goal of halving the survival gap by 2040.

Other than the programs described above, we have developed a cancer vaccine for oral cancer, developed genomic-based screens to repurpose drugs for head and neck cancers, developed a mobile phone app for early detection of oral cancer, and are developing new ways to improve outcome for low-income patients.

“Our goal is to save lives through impactful research in Asians.”

How close is science to “preventing cancer and catching it early”, to take up the motto of this year’s World Cancer Research Day?

Cancer research is the only way to find new ways to prevent cancer and to catch it early! However, there are more than 200 different types of cancers, and each one has a different proportion which is preventable.

  • Because of research, we now know that some cancers are caused mainly by lifestyle factors (e.g., lung cancer and oral cancer are linked to smoking and betel quid chewing, respectively), and prevention involves getting the public to change behaviors.
  • Because of research, we now know that some cancers are caused by viruses and bacteria (e.g., cervical cancer is associated with human papilloma virus), and prevention involves getting individuals vaccinated to reduce the risk of this and other related cancers.
  • Because of research, we now know that we can improve survival through screening of some cancers (mainly breast, cervical and colorectal cancers), and systematic screening has already prevented deaths due to these cancers especially in high-income countries.
  • Because of research, we know that increasing awareness and changing public perception of the curability of cancer can improve uptake of screening and enable early detection and greater survivability from cancer.
“Cancer research is the only way to find new ways to prevent cancer and to catch it early!”

What breakthrough in cancer research are you expecting in the next 5 to 10 years?

Personally, there is so much cancer research going on that it is hard to choose, but I am most excited about 2 aspects of cancer research:

  • First, that we can harness technology to enable early detection of cancers, be it through the use of mobile phone apps or other technology to detect the cancers early or to enable individuals to know what screening is appropriate for them. We are already using digital health and artificial intelligence to enable early detection, and I am hopeful that these tools will be a reality in the near future.
  • Second, that we can harness the patient’s immune system by using different strategies to improve the patient’s own ability to cure cancer, and this might even be possible for advanced cancers. We have already seen patients with advanced lung and skin cancers survive for more than 10 years cancer-free. I am hopeful that we will learn more about how to make this possible for patients with other types of cancers, whereas our work in breast cancer and oral cancer is already making headway in these directions.

 

Thank you very much for your time and your insight, Professor Datin Paduka Dr Teo Soo-Hwang.

Sarcoma Awareness Month 2022: An Interview with Megan Fletcher (Early Diagnosis Officer Sarcoma UK)

According to Sarcoma UK, sarcomas are uncommon cancers that can affect any part of the body, on the inside or outside, including the muscle, bone, tendons, blood vessels and fatty tissues. The three main types of sarcoma are soft tissue sarcoma, bone sarcoma and gastrointestinal stromal tumours (GIST). There are around 100 different sub-types of sarcoma.

We turned to Sarcoma UK to learn more about this condition and to call attention to Sarcoma Awareness Month, which is in July. Sarcoma UK is a national charity that funds vital research, offers support for anyone affected by sarcoma and campaigns for better treatments. We spoke to Megan Fletcher, Early Diagnosis Officer for Sarcoma UK.

 

What are the challenges in diagnosing sarcomas?

Sarcomas are not diagnosed as quickly and accurately as they could be. Patients are often unaware of its symptoms, and don’t visit their general practitioner (GP). 79% of sarcoma patients had not heard of sarcoma before their diagnosis. Improving this is essential, as it means an individual is more likely to recognise their symptoms as potentially cancerous, go to a GP, and increase the chances of them being diagnosed faster.

As sarcoma is uncommon and can present like other diseases, GPs can sometimes struggle to identify it. At their first appointment, 39% of sarcoma patients were either started on treatment for something else or were told their symptoms weren’t serious. Only a fifth of sarcomas are diagnosed after an urgent cancer referral from a GP, showing that GPs do not recognise the signs and symptoms as being that of a possible cancer and send patients on the right pathway. Patients also have to see GPs multiple times before their symptoms are taken seriously, with 35% of sarcoma patients seeing a healthcare professional more than 3 times before they were referred for further tests.

Getting the right diagnosis can be very slow, with 30% of sarcoma patients taking more than 6 months to receive an accurate diagnosis. Sarcomas are often missed on scans, either due to machines being misused or scans being misreported. This means patients with sarcoma are incorrectly told that they don’t have cancer and are consequently diagnosed at a later stage, and less likely to be offered curative treatment.

It is vital that as soon as sarcoma is suspected, patients are referred to one of the 16 specialist sarcoma centres across the UK to ensure they receive an accurate diagnosis and receive the best possible care. Sarcomas are extremely complex, and specialist centres have the expertise in this very rare disease required to give patients the best care. For example, a specialist pathologist is needed to ensure the type of sarcoma is accurately diagnosed and can be treated correctly: Diagnosis from non-specialist centres which were then reviewed by expert pathologists resulted in a major change in diagnosis 20–30% of the time. Ultimately, patients who are treated by a specialist sarcoma team have better outcomes, with the chance of survival post-surgery being significantly higher if surgery is co-ordinated by a specialist centre.

 

What are the current treatment options for sarcomas?

The treatment options for sarcoma include surgery, chemotherapy, and radiation therapy (with proton beam in certain circumstances and radiofrequency ablation for some lung metastasis).

Source: Sarcoma UK

What does Sarcoma UK plan for Sarcoma Awareness Month?

We know that only 1 in 4 people in the UK have heard of sarcoma, so creating awareness is a hugely important part of what we do. Sarcoma Awareness Month every July is an opportunity to talk to the press and ask our supporters to help amplify our messages.

This year, we are concentrating on action. Early diagnosis of sarcoma is a vital topic for us. We are launching practical projects to help clinicians, healthcare professionals and the public recognise and diagnose sarcoma faster and more accurately, which ultimately will save lives.

We have also partnered with Genomics England to highlight the importance of genomics in diagnosis with a range of patients, researchers and others contributing stories for a national press rollout through July.

Keep up with our activities this July on our website.

 

Can you tell us about the research projects Sarcoma UK is currently funding?

As a rare and complex cancer with few treatment options beyond surgery, research is vital to improve outcomes for people affected by sarcoma. Sarcoma UK has invested over GBP 5 million into research projects since 2009. We have just announced funding for nine new projects taking place in universities across the UK, exploring everything from cancer-bursting viruses as a potential new treatment for sarcoma to making treatments more effective in children.

Lots of the research we fund focusses on understanding sarcoma better in the laboratory, such as exploring particular genes which we know are important in how sarcoma develops. Researchers are already taking this knowledge to the next level through new work, developing ways to target these important genes and personalising treatments to each patient’s needs. Some research is focused around improving the quality of life for patients, such as tackling the anxiety many people feel around their sarcoma coming back after treatment and making the journey to diagnosis shorter and more straightforward. Ultimately our research programme supports the best science to improve care for people with sarcoma through more accurate diagnoses and better treatments.

 

Sarcoma UK has recently appointed a Patient Involvement Coordinator. Why did you see a need for this role and what is their function?

Sarcoma UK has an established, dedicated network of patients and supporters who have helped direct our work since the creation of the charity over 10 years ago. In February 2022, Sarcoma UK appointed a Patient Involvement Coordinator to ensure the voice of the sarcoma community is represented throughout the organisation’s work. Not only is this fundamental to our vision, but patient involvement brings a unique perspective and true insight into how the charity should operate, the services it will provide and the research it funds.

There are a number of significant benefits for organisations which involve supporters, including better informed decisions (less wastage in terms of financial and time costs), as well as bringing staff closer to the lived experience of people affected by sarcoma.

An example of recent patient involvement at Sarcoma UK was the recent Research Grant applications. Research projects we fund are now selected with the help of sarcoma patients and their families. Our Research Grant Lay Reviewers help to inform researchers of the things that matter most to people affected by sarcoma, evaluating each proposal on the relevance and importance of the project, the way the researchers communicate to non-expert audiences, and the quality of plans to involve patients in the research.

 

Many thanks for your time and for the interview.

World Blood Donor Day 2022: An Interview with Professor Andreas Buser

Blood. According to a saying it is “thicker than water”, and for one poet it is “a very peculiar juice”. We know that blood consists of plasma, red and white blood cells, and platelets. And we know that each component plays a different role: Platelets enable clotting, white blood cells are part of the immune system, red blood cells carry oxygen and carbon dioxide, plasma carries nutrients and waste.

With the onset of the COVID-19 pandemic, blood plasma got special attention as it might play a role in the treatment of an infection with the coronavirus.

On the occasion of World Blood Donor Day on June 14 we turned to a specialist, who was among the first to study the effect of convalescent plasma. Professor Andreas Buser is Director of the Regional Blood Transfusion Service of the Swiss Red Cross and head of Transfusion Medicine, Hematology at Basel University Hospital in Switzerland. He teaches at the University of Basel.

 

Professor Buser, please tell us about the study of convalescent plasma as a treatment for COVID-19 patients you took part in: What is the aim of this study? Who initiated it? When did it start? What are the findings so far?

The idea in essence: Antibodies against Sars-CoV-2 are naturally produced by the immune system during an infection with the coronavirus. Convalescent plasma, i.e. plasma from donors who have Sars-CoV-2 antibodies, is administered to severely ill COVID-19 patients in the hope that the antibodies in the transfused plasma will act in the body and accelerate recovery and prevent a fatal outcome in affected COVID-19 patients.

Time was extremely short, the virus was on the rise. No one knew at the time whether the idea would work. There were no information or facts about COVID-19 anywhere in the world.

We have only treated a few patients in our hospital and cannot draw any definitive conclusions. However, numerous studies have been carried out worldwide, some of them very well controlled, but with divergent results. There are large consortia that are now trying to draw conclusions for possible new waves of SARS Cov-2 or other viruses from the published and non-published data and experiences.

“Antibodies against Sars-CoV-2 are naturally produced by the immune system during an infection with the coronavirus.”

What else is blood and/or plasma being used for with regard to medical treatment?

Blood products are used for various medical conditions. Red blood cell concentrates (RBCs) are used to improve the oxygen supply to the organs in cases of anaemia. Anaemia can be caused by iron deficiency, haemorrhage, or reduced blood production due to diseases affecting the bone marrow (site of blood production).

Platelets are used to prevent or treat bleeding when there are too few platelets (e.g. in patients with leukaemia and its treatment) or when platelets are not functioning properly.

Plasma is used when bleeding occurs and the clotting factors that are needed cannot be replaced in any other way.

“Blood products are used for various medical conditions.”

How have blood transfusions and the use of blood components developed from the first documented transfusion in 1818 until now?

Since the first human-to-human blood transfusion in 1818, many important inventions have been made that have led to the current form of transfusion therapy.

Undoubtedly, the most important discovery was that of blood groups (the AB0 blood group system), as was first described by Karl Landsteiner in 1900. Today, 43 blood group systems are known and their knowledge and the current forms of diagnostic possibilities make it possible to find the best compatible blood product for the vast majority of patients. Other very important milestones were of course the possibility of storing the blood products and components, testing for infectious diseases which can be transmitted by blood and the technology of pathogen reduction of blood components.

“The most important discovery was that of blood groups.”

What developments are you expecting in blood transfusion in the next 10 years?

I expect more knowledge about when to transfuse and when not to transfuse.

Especially “personalized” blood products will be increasingly used to ensure optimal patient care. Securing the blood supply will certainly be a major challenge. In addition, we are moving in an environment that is becoming more and more regulated, which brings with it a challenge for blood establishments.

“I expect more knowledge about when to transfuse and when not to transfuse.”

The use of artificial organs and bone replacement has developed into a standard procedure over the years. Why has it not yet been possible to create artificial blood? Do you expect this to happen one day?

Artificial blood substitutes or blood from bioreactors (blood pharming) will certainly experience further development and will represent a therapy option at least for individual patients with complex blood group constellations, at least in rich countries.

 

If you were granted one wish for “World Blood Donor Day”, what would it be?

My wish is that, with the great help of donors, we can provide the right blood product at the right time for all patients. And I hope that the blood supply can also be sustainably improved in countries with fewer resources.

 

Thank you very much for your time and your insight.

Menstruation: There Is More than Meets the Eye

Menstruation is often inconvenient, sometimes painful, but mostly manageable. This applies to an environment with good sanitary standards and a general comprehension of the requirements necessary to handle the situation with dignity.

However, stigmatization of menstruation compromises menstrual health and hygiene which can lead to exclusion and discrimination. In certain societies, this might mean the end of education, of earning and providing for an income, of fully and equally participating in everyday life.

Another aspect of menstruation is that unbeknownst to most menstruators, the use of sanitary products can have unwanted side effects, not only for the health of those using them but also for the environment.

For Menstrual Hygiene Day on May 28 we wanted to know more about this topic and turned to Women Engage For a Common Future (WECF), a nonprofit network dedicated to a gender just and healthy planet for all. We spoke to Johanna Hausmann, consultant at WECF Germany, about the topic of toxic-free periods. You can download WECF’s brochure “Toxic free Periods” edited by WECF International based in the Netherlands here for free, and the German publication “Giftfreie Menstruation” is available here.

Women Engage For a Common Future (WECF; https://www.wecf.org/)

 

First of all, can you please tell us more about WECF?

Our international network consists of over 150 women’s and civil society organizations implementing projects in more than 50 countries. We believe that a sustainable future and environment needs holistic solutions reflecting the lives of people concerned. We believe in eco-feminist solutions based on our and our partners’ visions and needs. That is why we have an intersectional approach working on transformative gender equality and women’s human rights in interconnection with climate justice, sustainable energy & chemicals, less toxic waste, safe water & sanitation for all.

“We believe that a sustainable future and environment needs holistic solutions reflecting the lives of people concerned.”

One of your issues is “Menstruation Matters”. What is this about?

We stand up for the right to menstrual health and campaign for breaking the taboo on menstruation and reproductive health. Around the world girls, women and gender non-conforming people suffer from the stigma of menstruation through discrimination and often also the inability to afford sanitary products. However, sanitary products do not only affect people’s opportunities to participate in society but also have a huge impact on our health and our environment:

Many conventional menstrual health items have high levels of plastic and contain chemicals such as bisphenols or phthalates which can have negative health impacts. Labelling and information are missing. We are exposed to these substances without knowing. Along with this, disposable products create tons of waste which pollute the environment. We advocate for laws that prevent toxic substances in products, such as menstrual health products and single use plastic laws, and promote affordable and sustainable alternative period products. We campaign for the ban of taxes on period products, and, last but not least, we support partners with building menstrual health management proof toilets in schools.

“We stand up for the right to menstrual health and campaign for breaking the taboo on menstruation and reproductive health.”

Can you tell us more about the environmental aspects of sanitary products?

An average standard menstrual pad could contain up to 90 percent plastic. Plastic itself contains next to its fossil fuel-based basic material many chemical additives, often harmful to our health. These plastic particles end up in our bodies and in the waste dump, in the sea, in rivers and on beaches. This waste is polluting our beaches and oceans. But I don’t want to put the responsibility on the shoulder of women or people who menstruate; the gap of information, missing regulations to ban hazardous chemicals in products in general and insufficient toxic-free products on the market (world-wide) are reasons for the negative impact of those products.

A changing social and cultural attitude towards our periods could have a major impact on both our own health and on our mountains of waste. For example, greater openness would make wearing healthier options such as washable pads so much easier and more accessible.

“A changing social and cultural attitude towards our periods could have a major impact on both our own health and on our mountains of waste.”

Why is menstruation a political topic?

If there is one issue at the intersection of health, environment and the rights of women and gender non-conforming people – it is our menstruation. Here in Germany, in the Netherlands as well as in many other countries, both among the public and the policymakers, little attention is still paid to the environmental and health problems associated with our periods.

In addition to the existing social taboo on menstruation itself, the environmental and health aspects remain underexposed in the current social debate. As mentioned above, disposable menstrual products are not only harmful to the environment, as landfill waste and polluter of our sewers, beaches and oceans, but they may also be harmful to our health. In this respect, it is unacceptable that producers do not have to disclose the ingredients they use.

“Little attention is still paid to the environmental and health problems associated with our periods.”

What is the purpose of your brochure “Toxic free Periods”?

With the publication “Toxic free Periods” from our colleagues from WECF International and the German publication “Giftfreie Menstruation”, we do not only want to inform people who menstruate and their surrounding world but also encourage the use of more sustainable, safer and cheaper alternatives. We advocate for more openness, inform about facts and present practical knowledge about menstruation. Our particular focus lies on the unfair aspects of “common” menstrual products and habits and the resulting pollution of the environment.

Would you like to contribute to this discussion as well? Make it a topic in your own circles, talk about it at home. After all, openness is good for the women’s cause, the environment and our health.

 

Many thanks for your time and for the interview.

Oral, Head and Neck Cancer: A Neglected Entity? An Interview with the Head and Neck Cancer Alliance

April is National Oral, Head, and Neck Cancer Awareness Month. Although oral, head and neck cancer is the 6th leading cancer by incidence worldwide, it does not get as much publicity as other types of cancers. We turned to the Head and Neck Cancer Alliance to shed light on public perception, symptoms, risk factors, prevention, and the importance of screening of oral, head, and neck cancer.

 

Oral, head and neck cancer tends to be sidelined in the public perception. What is the reason for this neglect?

Although head and neck cancer is the 6th most common cancer by incidence worldwide, few people know enough about it. There may be a few reasons for this. First, while other cancers like breast cancer or colorectal cancer affect one anatomical part of the body, head and neck cancer can affect many parts (e.g., the tonsils, tongue, sinuses, etc.). Head and neck cancer is more of a “family” of cancers rather than a cancer affecting one area. Since we’re talking about cancer that affects many parts of the body, the public likely doesn’t see it as “one” cancer.

The second reason likely has to do with its historical risk factors. In the past, the majority of head and neck cancers were caused by tobacco use and heavy alcohol consumption, so there is a stigma that may be associated with this cancer. In the public perception, we believe that many people still harbor the idea that patients “did it to themselves”. Although this has never been a fair perception, nor an accurate one (especially today), it likely impacts the public’s perception about how much attention they need to pay to it, particularly if they do not use tobacco or consider themselves heavy drinkers.

“Since we’re talking about cancer that affects many parts of the body, the public likely doesn’t see it as “one” cancer.”

What are the symptoms of oral, head and neck cancer?

The symptoms of head and neck cancer can vary by the part of the body affected, for example:

  • Mouth cancer symptoms may include a white or red patch on the gums, the tongue, or the lining of the mouth; a swelling of the jaw that causes dentures to fit poorly or become uncomfortable; and unusual bleeding or pain in the mouth.
  • Throat cancer symptoms may include swollen lymph nodes in the neck; trouble breathing, speaking or swallowing; pain when swallowing; pain in the neck, the throat or one ear that does not go away; frequent headaches, pain, or ringing in the ears; or trouble hearing.
  • Cancer of the larynx (voice box) may first appear as changes in the voice, like hoarseness that doesn’t go away, pain when swallowing or ear pain.
  • Paranasal sinuses and nasal cavity symptoms include sinuses that are blocked and do not clear; chronic sinus infections that do not respond to treatment with antibiotics; bleeding through the nose; frequent headaches, swelling or other trouble with the eyes; pain in the upper teeth; or problems with dentures.
  • Cancer of the salivary glands may first appear as swelling under the chin or around the jawbone, numbness or paralysis of the muscles in the face, or pain in the face, the chin, or the neck that does not go away.

 

Alcohol and tobacco are the two most important risk factors for oral, head and neck cancer. How have restrictions on the sale and consumption of alcohol and smoking bans affected cancer rates, especially the incidence of oral, head and neck cancer?

In the past several decades, we have seen a decline in head and neck cancers caused by the traditional risk factors of tobacco use and heavy alcohol consumption. This is likely due to increased awareness of health risks, improved public health and policy measures and increasing support and resources for tobacco cessation. However, while many types of cancer have been declining overall, the rates of head and neck cancer have actually been increasing overall, despite the reduction in cases caused by tobacco and alcohol use. This increase is due to infection with human papillomavirus (HPV), a major risk factor for cancer of the pharynx (throat).

“The rates of head and neck cancer have actually been increasing overall.”

With the vaccination against HPF available since 2006 the cases of cervical cancer, which are commonly associated with an HPV infection, have declined. Have the cases of oral, head and neck cancer which are due to HPV infection declined accordingly? If not, why is this and what should be done?

At this time, we have not yet seen decreases in head and neck cancer rates as a result of HPV vaccination. However, we do hope to see that occur in the coming decades as we know there is a significant latency in HPV infection leading to head and neck cancer. So, this all comes down to timing. The HPV vaccine is meant to be given to preteens, around the ages of 11 to 12 years old. Because the vaccine has only been available for 16 years, those who were among the first to be vaccinated are only in their mid to late 20s. Additionally, when it was first introduced, the HPV vaccine was heavily targeted to girls (due to its association with cervical cancer), so many boys who could have been vaccinated, were not. Unfortunately, HPV-related head and neck cancer affects males 3 to 4 times as often as females. So, there are many young men out there who are unprotected.

As head and neck cancer caused by HPV infection does not occur for many years after exposure to the virus, sometimes decades later, those who are being diagnosed today with HPV-related head and neck cancer would not have had access to the vaccine when they were preteens because it was not yet available. As the first cohorts of HPV-vaccinated individuals reach adulthood and move toward middle age, we are hopeful that there will be obvious and significant decreases in the rates of HPV-related head and neck cancer.

“At this time, we have not yet seen decreases in head and neck cancer rates as a result of HPV vaccination.”

What should be done with regard to the prevention of oral, head and neck cancer, both by individuals and by politicians?

Individuals should take an active role in reducing their risk for head and neck cancer by quitting tobacco, reducing their consumption of alcohol, and using safe sex practices to prevent infection with HPV.

Those who have children—both girls and boys—should have them vaccinated against HPV to prevent the six types of cancer that HPV can cause, including head and neck cancer. There are six types of cancer caused by HPV (oral, head and neck, penis, anus, vagina, labia and cervix) that are, effectively, vaccine-preventable. To reduce the mortality rate and morbidities caused by cancer in future generations, it is important to act now, so that we can protect as many individuals as possible. The overall effect of reducing cancer rates and related morbidities within the healthcare sector could be significant and beneficial for everyone.

“It is important to act now to reduce the mortality rate and morbidities caused by cancer in future generations.”

As with many other types of cancer, early diagnosis is key to successful treatment. What do you recommend with regard to screening?

There are currently no screening tests for head and neck cancer like there are for cervical cancer (Pap test), breast cancer (mammograms), or colorectal cancer (colonoscopy). However, individuals can conduct self-exams of their mouth and neck to look for early symptoms that should be evaluated by a physician. To learn how to do a self-exam, visit this website. Individuals can also ask their dentist or physician to conduct a head and neck exam for them during their routine preventive visits.

 

Thank you very much for sharing your insight!

Dementia Action Week 2022: An Interview with Professor Janice Murray and Professor Adele May

On the occasion of Dementia Action Week, which is held from May 16 to 22, we got in touch with Professor Janice Murray and Professor Adele May. Together with Professor Shakila Dada they wrote the Fast Facts booklet “Dementia and Augmentative and Alternative Communication: Supporting Conversations”.

Janice Murray, who is Professor of Communication Disability at Manchester Metropolitan University in the UK, is an advocate for maintaining connectedness with those living with dementia through meaningful, co-constructed interactions. She is the current chair of the AAC Committee for the International Association of Communication Sciences and Disorders (IALP).

Adele May holds a PhD in Augmentative and Alternative Communication (AAC) from the Centre for AAC at the University of Pretoria, South Africa. As a speech language pathologist, she has a special interest in developing interventions that focus on functional real life outcomes for persons with communication disabilities.

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

 

Professor Murray, Professor May, what is dementia and what are some of the impacts on families and supporters?

Janice Murray: As a syndrome, dementia is the general label given to a cluster of irreversible changes in cognitive function that include memory abilities, communication skills, reasoning, making sense of your world, and executive functioning skills. Dementia is one of the major causes of disability in older adults and is recognised as a public health priority by the World Health Organisation. Currently there are 50 million people living with dementia worldwide. A global dementia prevalence is forecasted to reach 75 million by as soon as 2030.

Every year, there are nearly 10 million new instances of dementia diagnosis, and the impact of dementia on the health and wellbeing of those living with dementia, including family members, remains poorly understood. In particular, the economic health and social consequences require better understanding to support targeted and timely interventions.

“Dementia is one of the major causes of disability in older adults.”

Adele May: As much as dementia is a biomedical condition, it is actually also a social condition, which means that dementia not only affects the person living with dementia, but also the people around them, for example family members. The person living with dementia experiences changes in cognition and communication from a previous level of functioning. Family members are equally affected. In most instances, family members provide the main caregiving role for persons with dementia, and caring for a person with dementia can pose significant emotional and caregiving challenges.

“Dementia is also a social condition.”

How does dementia impact on the communication between the individual, the carers and the family around them?

Adele May: Communication is an integral part of our human experience. It creates possibilities to develop a sense of connexion with others. Persons with dementia may struggle to find the right word to use, so they may use vague words or what we call empty speech instead of using the actual word they want to describe. They have difficulty recalling recent information and may repeat questions that have already been answered. They also have a tendency to confuse names of people and difficulty in maintaining a topic of conversation. So, essentially this affects the meaning of what is being expressed.

The dementia impacts on one’s ability to be understood, to effectively communicate one’s feelings and preferences and opinions, and to take part in a conversation in a meaningful way. And over time, with the loss of language, persons with dementia may withdraw from social interaction altogether and may appear non-communicative. Maintaining the sense of connexion with persons with dementia becomes progressively difficult, because we know that communication is a reciprocal process where information is exchanged between people.

The communication difficulties impact the people with whom persons with dementia interact, and these are the everyday conversational partners such as spouses, friends, caregivers, and health practitioners. Conversational partners may be distressed at not knowing how to provide appropriate communication support. Therefore, techniques and strategies to support communication throughout the progression of dementia are imperative.

“Techniques and strategies to support communication throughout the progression of dementia are imperative.”

This is obviously where augmented and alternative communication (AAC) can be helpful. What exactly is AAC and how does it work?

Janice Murray: Augmentative and alternative communication, or AAC, is a term used to describe a wide range of techniques and tools that are used to support communication. But it also may be a tool or technique that can support challenges in terms of formulating the words and producing them in a speech stream.

AAC involves providing resources that attempt to compensate for temporary or permanent or changing communication challenges for an individual. The main purpose of AAC is to support the maintenance or the development of typical participation in many aspects of daily life. We take communication for granted until we lose the capacity to use it, or we don’t develop the capacity to use it in a way that is typically recognised, so AAC is trying to level the playing field of participation for individuals with communication disability.

The word augmentative acknowledges that some people require the use of supportive strategies to enhance existing or partly functional spoken communication. Alternative communication, on the other hand, refers to strategies that entirely replace the natural speech attempts. Depending on the person’s complex communication needs, AAC strategies can either augment their communication abilities or provide alternative ways of communicating.

In the field of AAC, different forms of communication are described within two broad categories:

  • Unaided AAC describes any form of communication that can be achieved without any additional tools, resources, or equipment. In other words, the person’s body is used to effectively convey meaning, typically for those with adequate motor ability. This could include using sign language or pantomime to get your message across, and we all adopt these strategies when perhaps we can’t remember the word we want to use.
  • Aided AAC describes any tool or resource or technology which can act as a substitute for inadequate speech production or language skills, or which can support you to focus on the conversation. These may include quite straightforward things like using photograph albums, so you have a joint focus of attention and recognise the people in the photograph or the activities happening in the photographs. It could be more formalised into something like laminated pictures or word boards. Tablet devices are very much used now, with downloadable picture symbols and other visual materials, and there are also specialised electronic communication aids.

When used together, both aided and unaided communication strategies highlight the multimodal nature of effective communication, and a combination of these can be particularly supportive for those living with dementia and their conversational partners.

The main purpose of AAC is to support the maintenance or the development of typical participation in many aspects of daily life.

Adele May: AAC is helpful to persons with dementia in particular as various forms of AAC techniques and tools and resources can aid their understanding of a situation and enable them to convey a message effectively. The use of AAC supports persons with dementia to participate in decision making conversations, and to share or exchange information and feelings. AAC helps to support and maintain conversational autonomy in those living with dementia.

Conversational partners can use AAC techniques to scaffold or support an interaction to ensure that the communication attempts of a person with dementia are as effective as possible. However, to be most helpful, it is important to start with communication support through AAC as early as possible and ensure that it is tailored to the preferences of each individual living with dementia.

“AAC helps to support and maintain conversational autonomy in those living with dementia.”

What can individuals with dementia and their supporters get from your book?

Adele May: We have developed a freely downloadable resource in the form of a poster which gives key messages from our book. This can be downloaded and pasted in everyday settings like care homes, hospitals, and waiting rooms. It provides essential information for family members, caregivers or anyone that may be affected to help someone with dementia or for those who just need general information on the condition.

Janice Murray: In particular, I would like to think that there would be something for a range of medical staff, health care workers, and family members to recognise what can be positively achieved in terms of supporting and providing intervention that is tailored to the needs of their person with dementia and how that will change over time.

 

Many thanks for the interview and for the insight!

Association between Psychiatric Disorders and Glomerular Disease: An Interview with Hailey E. Desmond

Patients with chronic health conditions, particularly chronic kidney disease, are at heightened risk for psychiatric disorders. A group of scientists conducted a study to learn more about the mental health of patients with glomerular disease and published it in the journal Glomerular Diseases. We spoke with the corresponding author of this study, Hailey E. Desmond from the University of Michigan, Ann Arbor, MI, USA.

 

How did you come to the hypothesis on the association between psychiatric disorders and glomerular disease?

Since 2015 I have collaborated with a program called the Kidney Research Network (KRN). Within the Kidney Research Network we are supported by a patient advisory board comprised of patients and caregivers of those with glomerular disease. Glomerular diseases are a group of kidney diseases that affect the filters in the kidney. The symptoms and treatments for glomerular disease have a significant impact on patients’ quality of life. During conversations with our advisors, the topic of the mental health implications of glomerular disease regularly came up. I have a history working in mental health disorders and wanted to champion a study to explore the mental health of patients with glomerular kidney disease. After reviewing existing literature, we found this to be a topic that was not well addressed so we pursued the KRN registry of approximately 1,200 patients to investigate the relationship.

 

What would be the take-home message for interested patients who may read your article?

Like other chronic conditions, individuals with glomerular kidney disease may be at increased risk of experiencing anxiety, depression, and other mental health disorders. Our study found that about 1 in 8 patients were diagnosed with a mental health disorder after the onset of kidney disease. The rate was highest among adolescents when compared with adults and younger children. Furthermore, those who had end-stage kidney disease (kidney failure) were more likely to be diagnosed with a mental health disorder. We are working to raise awareness in the health care community and encourage individuals with glomerular disease to talk to their health care team if they are experiencing signs of anxiety or depression.

 

How could your findings change patients’ lives?

We hope our findings can empower patients to recognize their risk for these conditions and feel confident discussing them with their health care team as part of their overall health.

Kidney Research Network cores (source: Hailey E. Desmond)

Kidney Research Network cores (source: Hailey E. Desmond)

Which group of patients may especially benefit from your research?

While all patients may benefit from the knowledge gained from this study, we feel it is particularly impactful for adolescents and caregivers of adolescents. It is important to recognize and engage in discussions to encourage mental health.

 

What are the next steps to translate your research findings to patients?

First, as part of the Kidney Research Network, we are launching the second phase of a quality improvement project to encourage mental health screening annually in patients with glomerular kidney disease. Second, we encourage the integration of mental health screening into practice and prompt referral to mental health care specialists when needed.

 

With regards to patients living with glomerular disease, what are your next research projects?

The Kidney Research Network’s mission is to improve evidence-based treatment options and optimize health outcomes for patients with glomerular diseases. We have many projects that are ongoing to advance this mission. Visit the Kidney Research Network website to learn more!

 

Thank you very much for your time and your insight.

How to Boost Your Immune System: An Interview with Prof. Emilia Vassilopoulou

With the COVID-19 pandemic entering its third year and people being more aware and worried about their immune system, we turned to Emilia Vassilopoulou. She is Assistant Professor of Diet and Nutrition, Clinical Dietitian-Nutritionist and Psychologist at the International Hellenic University in Thessaloniki, Greece, and a pro to ask for advice on how to boost your immune system.

 

What are the top foods to boost your immune system?

Originating from a Mediterranean area, our field is a thesaurus of immune boosters. Oregano, thyme, cinnamon and other herbs and spices should be included during our cooking preparations instead of salt, fat or sugar. Definitely, fish and seafood are at the top of the list, as they are shown to have a strong anti-inflammatory effect in both acute infections and chronic non-communicable diseases.

Fresh seasonal fruits, which are rich in micronutrients and fiber, strengthen our immune response against viral infections and reduce the risk of complications upon infection. As such, whole-grain products and naturally fermented products such as kefir, natural yogurt and raisins enhance the immune defense system through a healthier microbiome.

Unsalted nuts combined with dry fruits are the ultimate couple for energy and avoidance of incessant snacking, which is relevant to unhealthy weight and reduced immune support.

“Fish and seafood are at the top of the list, followed by fresh seasonal fruits, whole whole-grain products and naturally fermented products.”

What is your personal go-to when you feel a cold coming?

When I feel a cold is coming, I keep my nasal mucosa clean with frequent rinses with an isotonic saline solution. I certainly remain active and hydrated by drinking a lot of water and sugar/caffeine-free warm herbals. My meals remain light, and usually I increase fruit intake.

 

What do you do to help your body fight the current pandemic?

The side effects of the pandemic are not limited to the ones infected; we are all suffering from the consequences, for both our somatic and mental health. Therefore, during the pandemic, I remained faithful to the principles of a balanced diet as well as home-made meals to safeguard both variety and good taste. Also, I exercised on a daily basis; due to the quarantine there were limited options although I found the one most appropriate for me and kept my body strong and flexible and my mind relaxed.

“During the pandemic, I remained faithful to the principles of a balanced diet. Also, I exercised on a daily basis.”

Do you recommend dietary supplements? If yes, which ones do you consider helpful? If no, why?

Dietary supplements can be helpful, mainly in cases where a balanced diet cannot be guaranteed. For example, vitamin D in the first months of life has been proven to enhance immune and bone health in infants. Folic acid is essential during pregnancy, and iron supplements can cure iron-deficiency anemia.

Also, in the incidence of acute infections, vitamin C, zinc and vitamin D might be protective against serious complications. So, although they cannot substitute a balanced diet, dietary supplements can be beneficial.

“Dietary supplements can be helpful.”

What role does mental health play in supporting and/or restoring your immune system?

As a clinical nutritionist and psychologist, I can reassure you that our brain can affect our body’s immune response. Nutritional psychiatry and neurology are among my research interests. There is an abundance of recent literature on the exponential role of dietary effects, through the gut-brain axis, for our mental health. Certainly, there are more foods apart from chocolate that are good for mental health. To start with, good sources of omega-3 fatty acids such as fish, flax seeds, chia, walnuts, guavas, mangos and berries modulate inflammatory processes and their direct effects on neuronal membrane fluidity and receptor function. Moreover, monounsaturated fats such as olive oil and avocado have been linked to reduced incidence of dementia and improved memory performance.

Foods rich in tryptophan, which is a serotonin precursor, have been shown to improve social interactions, decrease aggression and dominant behavior. Serotonin is important for both mood regulation and regulation of cognitive functions. Apart from chocolate, dairy products, chicken, oats and nuts are good sources of tryptophan.

Furthermore, whole-grain products and a variety of seasonal fruits and vegetables as well as dried fruit enhance mental health due to their high antioxidant, anti-inflammatory activity.

“There is an abundance of recent literature on the exponential role of dietary effects, through the gut-brain axis, for our mental health.”

Apart from food, what other immune boosters do you recommend?

  • Remain active: Regular physical activity can improve your muscle strength and boost your endurance. Oxygen and nutrients are delivered to the body tissues and help the cardiovascular and respiratory system work more efficiently. Everybody can identify their favorite exercise to keep their body in action
  • Frequent exposure to nature: Enhances positive emotions and contributes to physical wellbeing, reducing blood pressure, heart rate, muscle tension, the production of stress hormones, benefits immune response and may even reduce mortality.
  • Actively cultivating positive emotions: When facing a stressful situation, actively cultivating positive emotions regulate immune response and counter depression. Studies have shown an indisputable link between having a positive outlook and cardiovascular, immune and metabolic response.
  • Have a healthy self-esteem, self-worth, self-concept: These three psychological senses are important for our psychological immune system, which conserves our personal, familial and social well-being. Having self-acceptance facilitates our relationships with ourselves and others, reduces stress levels and enhances our immune system.

 

Many thanks for the interview!

Ovarian Cancer Awareness Month 2022: An Interview with Andrea Krull (Patient Advocate)

Green socks for women with ovarian cancer? What does this mean? Politicians from the left spectrum are referred to, rather pejoratively, as “red socks”. But what is the “Green Socks Campaign” all about? On the occasion of Ovarian Cancer Awareness Month in March we spoke with Andrea Krull, founder of the Verein für Gynäkologische Krebserkrankungen Deutschland e.V. / Schwerpunkt Eierstockkrebs (Association for Gynecological Cancers Germany / Focus: Ovarian Cancer) and initiator of this project.

 

Ms. Krull, what prompted you to become involved with the topic of ovarian cancer, and how did the association come about?

Back then, I had founded the first self-help groups in Kiel, Hannover and Hamburg; a choir and other self-help groups were in the pipeline. So, I decided to form an umbrella organization to better coordinate and professionalize all these projects. Besides, nothing like this existed at the time, and I felt that there was a need for a reliable point of contact for women with ovarian cancer. So, it made sense to create an association that would take care of the women’s concerns and needs and reflect the patients’ side.

 

The spectrum of your services includes information on hospitals, therapy options and medications, but you also cover self-help and self-care. What is the goal of the association?

It is about providing a platform for women, to improve things, to communicate with doctors, to impart knowledge and know-how. I wanted things to get better, because to be honest, the situation at that time before the association was created was not good for us women. Everything was lacking. Since ovarian cancer is a serious and complex disease with various challenges and multiple prospects, I wanted to bring everything together and help to build transparency. My aim has been to give women knowledge and to empower them. We advocate for our side while striving to understand the side of health care professionals.

 

The "Green Socks Campaign" (source: Andrea Krull / www.eskd.de)

The “Green Socks Campaign” (source: Andrea Krull / www.eskd.de)

 

How did you come up with the idea for the “Green Socks Campaign”?

It all started when a very good friend of mine was also diagnosed with ovarian cancer. Due to surgery and chemotherapy as well as during her relapse she often felt cold. I asked her at the time what her favorite color was, and she responded “green”.

So, I started knitting her beautiful, warm, green socks. As the knitting took longer and many things came in between, I unfortunately was not able to give the socks to my friend, because she passed away in June 2016.

Every time I myself put on these socks in memory of her, I think intensely of my friend. I am still very sad that I did not manage to give the socks to her, although I looked after her closely at the time and accompanied her throughout.

Then one day I had an idea. “The Heart Pillow Project” for women with breast cancer made me wonder what I could do for women with ovarian cancer. What would help them? What would be a nice and “warm” way to convey information about ovarian cancer? How could doctors and nurses help and support? What was reasonable, feasible, and would attract attention?

And suddenly it came to me: green socks, naturally! Green stands for hope. Green socks would be the perfect vehicle for hope and information. So, the “Green Socks Campaign” was born.

In October 2019 I called for the donation of green socks on Facebook. The response was incredible! By December 2018 we had already received over 1,000 pairs of green socks, and a great number of clinics had contacted us to join in and distribute the socks to women with ovarian cancer. We had over 30,000 clicks in one week and hundreds of mail requests. You can follow the whole story on Facebook and Instagram. There you can find videos, articles, facts and figures. A huge thank you to everyone who helped, knitted, donated, and supported us.

This campaign is a huge success! I am proud that I had this idea back then, because in the meantime thousands of women have received more information about ovarian cancer through the “Green Socks Campaign” which results in them making better and more informed therapy decisions.

 

The "Green Socks Campaign" (source: Andrea Krull / www.eskd.de)

The “Green Socks Campaign” (source: Andrea Krull / www.eskd.de)

 

Is this campaign limited to Germany or does this project already exist in other countries?

Miraculously, the “Green Socks Campaign” was launched in Austria on December 6, 2021. We are planning to introduce this campaign to Switzerland next; other countries are to follow. Therefore, we are now looking for volunteers who would like to implement our idea in their country. Our group is happy to help and give support during the start-up phase. Just get in touch with us.

 

What does the national and international network of your association look like? With whom do you cooperate in the fight against gynecological cancers?

We are very well networked and collaborate with many international initiatives on gynecological cancers, like World Ovarian Cancer Coalition, ESGO Patient Advocacy (European Society of Gynaecological Oncology), all European patient advocacy groups for gynecological-oncological diseases, and the associated experts and hospitals.

 

What is your expectation from science and politics regarding the fight against ovarian cancer or gynecological cancers in general?

I wish that this disease could be detected earlier. Gynecologists and family doctors need to be more aware of this disease when they face unspecific symptoms in women. Also, better information about treatment and therapy needs to be provided, and women need to have a reliable and safe network of information and care when they fall ill.

I would also like to see more support and appreciation for the work of volunteers. Without the help and commitment of devoted volunteers, many services would cease to exist, and the comprehensive supply of information would no longer be available. Therefore, politics must strengthen the work of volunteers, and sustain self-help groups. We all burn for “our cause”, but we shouldn’t burn out. I would be happy to elaborate these thoughts and present them in detail to politicians and decision makers.

 

Thank you very much for this interview!

Telehealth in the Field of Nutrition: How Do Patients Benefit?

During the COVID-19 pandemic hospitals and healthcare institutions as well as patients and their supporters have been forced to employ new routines to ensure safe care. Increased hygiene and safety measures now include testing, social distancing, and wearing masks. Hence, telehealth is expanding. Although telemedicine has been used for decades in different domains, we now see a general uptake and innovative ways how telehealth is being employed.

In the field of nutrition, telehealth-based interventions (e.g., for promoting diet changes and body mass index reductions) have already been applied successfully. So, will tele-counselling sessions in nutrition emerge as an alternative to in-person counselling? We spoke with Sandra Arévalo, a Registered Dietitian Nutritionist (RDN) and a spokesperson for the Academy of Nutrition and Dietetics, about the impact of telehealth in nutrition. The following responses are specific to her and her team in particular. For information about telehealth in general, please go to the website of the Academy of Nutrition and Dietetics.

Please note that March is National Nutrition Month®. This is an annual campaign created by the Academy of Nutrition and Dietetics. During the month of March, everyone is invited to learn about making informed food choices and developing healthful eating and physical activity habits.

  

What kind of applications do you see for telehealth in medicine, especially in the field of nutrition?

We use Zoom and the phone but there are a number of apps and telehealth platforms that registered dietitian nutritionists use to communicate with their clients.

 

What are the benefits of telehealth for patients?

There is no commuting needed which saves time and money. For those at work, they don’t need to take time off. If there is no registered dietitian nutritionist close to you, it’s easier to access one via telehealth.

 

Can you describe the current uses of telehealth by Registered Dietitian Nutritionists (RDNs)?

My particular group of RDNs do nutrition and diabetes education 1:1 via Zoom. We do diabetes self-management education as well as diabetes prevention, facilitate support groups and conduct food demos. Telehealth makes it possible to provide a variety of services to clients.

 

What do you see as barriers for a successful telehealth implementation?

Our team makes sure to work with IT to be able to comply with the Health Insurance Portability and Accountability Act (HIPAA). They also make sure they have a private space to work to protect the privacy of their patients. You also have to make sure your patients understand the technology to have a successful session.

 

What needs to be done in order to overcome these barriers?

You have to make sure that you work with IT to establish some security systems that protect your telehealth system from hacking. You may need to pay for a subscription because usually the free versions of platforms aren’t secured.

 

What is your vision for the future of telehealth with regards to the field of nutrition?

Telehealth is here to stay. Our numbers have increased since we started seeing patients via telehealth. Patients are also happier because it’s more convenient to them. In our case, our only disadvantage is that we can’t check your patient anthropometrics, but they can be reported by the patient when necessary. While this is a disadvantage for our team, at the same time it also empowers patients to own their journey in their way to practice healthful habits because they are held responsible for their health outcomes.

 

Thank you very much for your time and your insight.

World Obesity Day 2022: An Interview with Vicki Mooney (Patient Advocate / European Coalition for People Living with Obesity)

On the occasion of this year’s World Obesity Day (March 4, 2022) we spoke with Vicki Mooney, patient advocate and Executive Director of the European Coalition for People Living with Obesity (ECPO). ECPO is working collaboratively across Europe to improve the lives of people who are living with and are affected by the chronic disease of obesity through advocacy, policy and education.

Note: The statements and opinions contained in the video and podcast episode are solely those of the speaker.

Video Interview

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Can you please tell us how the European Coalition for People living with Obesity (ECPO) came into existence?

The European Coalition for People living with Obesity really originated from a meeting in 2013 in Sofia, Bulgaria, which was at the European Congress on Obesity, where a number of patients and national advocates came together. They were invited by the scientific and clinical community and really to unite that patient voice and see how we could integrate that and work and co-create really with the scientific community there. Now, I will admit that we were all a little bit anxious, wondering why a patient community would be brought in. But over the years, we have seen how working together hand-in-hand has created change and driven awareness of obesity as a chronic relapsing disease.

In 2019, ECPO was actually launched. Our coalition was launched as that group of national voices that were coming together to be that authorative patient voice in Europe. And here we are now.

 

ECPO’s aim is to change people’s attitudes and advocate together for acceptance, education and disease recognition. What are you doing to achieve this?

Through our work, what we aim to do is to improve quality of life for people, to drive awareness of disease, to educate people. And the way we do that is working with our other communities, sister communities such as EASO, working with people in the liver community, in the diabetes area, and ensuring that people are aware that obesity is a chronic relapsing disease. A number of our advocates lead national programs where they are involved in advocating on the national level for disease awareness. And we’ve seen that wonderful work in Germany and Italy over the last number of years.

We also have a number of committees, such as stigma committees and communications committees, where we can ensure that we’re disseminating all of the information correctly. Now, as we work with the scientific community, and obviously that’s not ideal for our patient communities where the language may not be as plain as we would like. And what we do is, we break that down into simpler terms and language, so that the average person can actually engage, and can get involved, and can understand the complexity of obesity and not just the scientific terminology. So, by working together, coming together and building more advocates, more representatives of patients, and connecting them with the communities they need, we are raising and driving awareness.

 

What are ECPO’s plans for World Obesity Day?

I’m quite excited that on this World Obesity Day we have been in a position to give out a number of grants to the tune of over EUR 25,000 to our patient communities. Now, these are for the national organizations where they can take the toolkit that we have worked on with EASO on the World Obesity Day EU website. They can take all of those materials, they can have their own event where they drive awareness for people to act, as well as for us at ECPO.

We worked on a number of videos with the patient community to show the quality of life after a patient has received treatment for obesity. As we know, we talk and we see lots of national plans on prevention for obesity, which is tremendous. And we need this. But we also need to focus on treatment for people who live with obesity. So, these videos will highlight that. They come in from Switzerland and Germany, from Spain. There are various countries involved. We’re quite excited to launch these. And, of course, we will have on World Obesity Day our own patient lounge, which we will launch from Brussels itself, and focus on a little newscast, jumping in and out of these countries to see what is happening on the ground in perhaps Slovakia or France. Or even with our colleagues from Sweden down to Italy.

 

The motto of this year’s World Obesity Day is “Everybody Needs to Act”, following last year’s motto “Everybody Needs Everybody”. What are your thoughts on these mottos?

I think these mottos are very simple and direct, and I think for anybody, whether or not you’re aware of obesity as a chronic relapsing disease or not, you would look at it and say: “Well, why do I need to act?” And I think it’ll instill that question in people’s minds where they’ll probably say: Actually, hold on. I have a responsibility as well to engage, to stop using stigmatizing language, to, stop presenting in a way that is stigmatizing to people living with obesity. Or perhaps actually to be an advocate, to become an advocate and support national plans for driving change. So, these models will help us in getting the message across to people that now really is a time to act for your loved one or your family member or even your colleagues or that person in your life that has obesity and has been met with barriers all along the way of your life.

 

How has the current pandemic affected the quality of life of people living with obesity?

The pandemic has actually been quite challenging and put a lot of, unfortunately, barriers in the way for people living with obesity. As we know, with various other chronic diseases and illnesses, there was no stopping of treatment. However, unfortunately, with people living with obesity, if they are on a treatment plan, perhaps for surgery, or for some other intervention that got pushed back. And this has been probably the biggest disappointment for people who have obesity, where suddenly you’ve gone from waiting a number of years to meet a multidisciplinary team, the pandemic hit, and resources were given elsewhere, and you’re back on a waiting list. And I think on top of that as well, whether or not you’re somebody who is genetically, predisposed to having obesity, which we know 70% of people are who have obesity, whether or not that is, you’re part of that. Everybody was locked down, everybody was at home, and your activity may have stopped. The gym will have shut down. You know, everything got set back and people’s health wasn’t at the forefront. We didn’t have doctors coming on telling people to get out and go for a walk and have a healthy mindset and go to the vegetable stalls and the markets, because that was not possible.

So, if you’re somebody who hasn’t got obesity, that was a challenge. Can you fathom how hard that was for somebody who has overweight or has obesity and therefore actually didn’t have the support they needed? And for people like myself – I gained weight through lockdown because all of my support broke down. Other than having the support of the national advocates who did an online support group for people with obesity, to encourage us to stay in that stronger mindset that change will come and we will get the support back. So, it has been challenging.

 

Thank you very much for your time and your insight.

International Childhood Cancer Day 2022: “Does a Monster Eat My Hair?”, a Picture Book on Leukemia

International Childhood Cancer Day (ICCD), which is held on February 15 each year, is a worldwide collaborative campaign in order to raise awareness about childhood cancer and to show support for children and adolescents with cancer, the survivors, and their families.

On the occasion of this year’s ICCD, we spoke with Grit Brunner. She created both the text and the illustrations for a picture book on childhood leukemia as part of her school leaving examination in 2021. With her book “Does a Monster East My Hair?”, Grit Brunner offers a helping hand to little patients and their supporters while facing the challenges of diagnosis and treatment. The picture book was originally published in German in September 2021 and has meanwhile been translated into English, Spanish, and French.

 

 

You originally wrote and illustrated the picture book as your school leaving thesis (“Matura”). How did you come up with this topic? What was your motivation to write such a book?

I started thinking about the topic of my thesis very early on. In the process, I realized that I wanted to do something creative and something medical. A picture book on the subject of childhood leukemia is a good way to combine both aspects. In addition, I would like to use this book to help people affected by the disease to come to terms with it.

It feels great to see the book printed. However, it still feels unreal so far. I never imagined that my picture book would be found on the shelves of bookstores, private homes or, for example, hospital libraries.  So far, I have received a lot of positive feedback from doctors and support group staff.

 

How did you go about it? Where did you start? How did you find your style?

I systematically researched and read extensive literature on leukemia and creating picture books to give me a good knowledge base. I also looked at picture books on all kinds of topics for creative inspiration.

At the beginning, I came up with a rough plot outline. Based on that, I wrote the story and illustrated it. Throughout the process, I kept adjusting and revising the images and text. I think everyone of us has their own style, and it’s not the first time I painted something. After a few sketches, I got into it and found my style.

 

How did you learn about the disease, and how did you ensure that your book is medically accurate?

Mainly through medical books, but also on the Internet, such as the Swiss Cancer League (“Krebsliga”) website. I read a lot of reference books about leukemia and summarized the relevant basics about this disease, including diagnosis and treatment, in an additional theory section of my thesis. In addition, I exchanged ideas with my father, who is a medical doctor.

 

How did you develop the leading character? Did you know from the beginning what she looks like, what she does, what kind of character she has?

At the beginning I only thought about a rough plot. Only during the actual writing did her character develop. Before I created the final illustrations, I tried out various ideas. Finally, the girl developed from these sketches.

Why was it important to you to tell this story?

Childhood leukemia is the most common oncological disease in children up to the age of 15. The sick child, the siblings, the parents and the general environment are exposed to great physical and psychological stress. In addition, there are not many picture books about leukemia in which the child itself is ill. It is important that children understand their disease and know what is happening to them. When you explain a disease to a child you must not trigger fear, but rather give courage and confidence in an evidence-based and empathetic manner.

 

Who do you think should read the book? Who is your story aimed at?

The illness affects not only the sick child, but also the environment. Life changes abruptly, and parents in particular are very worried about their child. Siblings are sometimes afraid of being blamed for the illness, for example, because they have teased their sister or brother. Often the parents worry so much about the sick child that they have less time for the others. This makes the siblings sad. Therefore, it is important that they understand why their parents are sad and spend less time with them.

 

Author of children’s books or doctor? What does your professional future look like?

If everything works out, I will study medicine. Creating picture books gives me a lot of pleasure, but I want it to remain a hobby. I don’t plan to write another book at the moment, but maybe there will be a suitable time to create another one in the future.

 

Many thanks for your time and for the interview.

World Cancer Day 2022: An Interview with Dr Cary Adams (CEO UICC)

World Cancer Day is an initiative of the Union for International Cancer Control (UICC) and came to life on February 4, 2000 at the “World Summit Against Cancer for the New Millennium” in Paris. The core belief of the organizers of World Cancer Day is that access to life-saving cancer diagnosis, treatment and care should be equitable for all – no matter where you live, what your income, your ethnicity or gender. They think that governments must be accountable and national leadership on policies, legislations, investment and innovation is key to accelerated progress.

We spoke to Dr Cary Adams, CEO of UICC.

Note: The statements and opinions contained in the video and podcast episode are solely those of the speaker.

Video Interview

Podcast Interview

To access further The Waiting Room Podcast episodes and/or subscribe to the podcast channel, visit The Waiting Room Podcast landing page.

Transcript

Welcome Dr Adams and thank you for agreeing to this interview. Will you please introduce yourself?

Thank you very much for giving me the opportunity to talk to you. I’m Cary Adams, I’m the CEO of the Union for International Cancer Control, and we’re the organization behind World Cancer Day every year, which takes place on February 4th. We’re a small team, but we’re fortunate enough to be part of a membership organization which has 1,200 cancer organizations around the world in 173 countries. And what we’re able to do is to galvanize that community to make World Cancer Day on February 4th a great celebration of progress in the way in which we are addressing cancer in the world. And it’s something that, personally, I look forward to every year because I see the cancer community do the most amazing things on that particular day.

 

Your campaign theme for this year and the following two years is “Close the Care Gap”, concentrating on the power of knowledge. Based on this scheme, what do you hope to achieve by 2024?

We have a three-year theme for our World Cancer Days, and we’ve just completed the last one, which was very successful. And the theme of that one was called “I am and I Will”, and over a three-year period, we’re trying to give people encouragement to take some responsibilities about their life and their families and colleagues and friends, and to make a difference. So, what will you do to make a difference individually? And that worked really well. We had fantastic coverage through social media. The press picked it up around the world, and I think we engendered a spirit of ambition that we can do something about cancer.

The new thing, which has been discussed across our community with an advisor group and the board of the Union for International Cancer Control, is probably a punchier theme than we’ve had before. It’s on the subject matter of inequities; the inequities which drive different outcomes with regard to cancer survival and treatment and care, and “Close the Care Gap” is all about inequities. Now, inequities have become a major concern for all of us as we’ve actually gone through the COVID pandemic, where we’ve seen that different communities have received vaccinations, different communities have had different reactions to COVID. Often, some underlying risk factors like obesity or smoking has caused a more serious reaction to COVID.

And all of these risk factors and inequities which exist in the world, access to health systems, access to financial coverage for being treated for any disease or illness around the world, are the very same ones which cause there to be different survival rates of cancer around the world. Availability and knowledge, the understanding of your body and when you should go and see a doctor. All of these inequities make a big difference to cancer survival in all countries. It’s not just the low- and middle-income countries, but also high-income countries as well.

So, UICC at the very heart of its purpose statement talks about addressing inequities, and that’s manifesting itself in the way that we framed the World Council Leaders Summit last year, which is about inequities in technology, the way we’re constructing the World Cancer Congress in October this year in Geneva, which will have an equity theme running through it, the way that we’re addressing cervical cancer around the world to make sure that no woman should die from cervical cancer because they haven’t had vaccination when they were a girl. They haven’t had access to screening. The availability of medicines around the world, making sure that every country has the basic medicines available, as described by WHO, which is the essential medicines on their list for cancer.

So, it’s right at the heart of everything we do, but we’ve decided for the next three years we will raise the temperature on inequities around the world, which are causing people to die unnecessarily through cancer and to close the care gap, because that’s the main theme that we will use is the way we will publicize the day both this year, next year and the year after. With a view that this year is more about information sharing, so that people become more aware of the issues of inequities and how it impacts cancer, both the chance of someone getting it and the chance of someone surviving it, and hopefully over the next two years we will progress the campaign, link it with other work that we’re doing, we’ll be able to get by the third year people to actually say: I want to make a difference here. I want to talk to my governments. I want them to ensure that our National Cancer Control Plan is open to all parties in society, that no minority is going to be missed out. That this is clear in how it helps the aged as it helps the young. It is clear how it helps the people who are rich and those who are poor, the ones in the cities and the ones in the rural environments.

We are hopeful, by the end of the campaign we’re going to have people not only recognizing that there are major challenges we have to face to ensure that everyone has a fair chance to get the treatment and care they want, but that also we have responses from those in power to make sure that those issues are addressed. So, it’s a fairly large campaign that we have to run over the next three years, but we’re very comfortable given the feedback we’ve had so far that this is a subject matter which resonates not only with the cancer community, but with the media and with governments and with our colleagues at the World Health Organization, for example. So, it’s the start of an exciting three-year campaign.

 

How do member organizations use this day?

The member organizations, and we’ve got over 1,200 in 173 countries, they have choices. I mean, we provide them with a lot of basic information from Geneva, fact sheets and ways in which they can publicize the issue of inequity in their country. But it’s really down to each organization within their country to build the day and the theme into work which is important to them. By way of example, the challenges of inequity in the USA will be very different from the challenges of inequity, for example, in India or the challenges of inequity in an African country. So, each organization has to understand where the challenges are in their country and then use the day to raise the profile of that, whatever it may be, to ensure that something can be done over time.

For example, a breast cancer organization, which focuses specifically on breast cancer, will use the day and the theme to talk about, for example, in Washington, which I know, I’ve been to it a fair number of times, the cancer survival rate of breast cancer in the wealthier areas of Washington is far higher than in the poorer areas of Washington. Okay. So, this isn’t about between high-income countries and low-income countries. It can even be within a city that we can challenge the issues and the problems that exist, which means that women in poorer areas of cities all around the world tend to be fought and have screening, and they present later. And for those of us who are aware of the challenges of a late presentation on any cancer, the late presentation of stage three of a breast cancer is far more difficult to treat, and less successful being treated, than one which is identified at stage one and two. So, this is an example where a cancer organization in UICC specifying in this particular cancer may reuse the day to raise a challenge that they see on their particular area of interest.

But it’s not just on the cancers. If I take, for example, organizations in UICC are passionate about the risk factors, like tobacco control. In some countries, you have tobacco use at 25, 30, 35%. In other countries, it’s down at 10%. Now, that’s not an inequity issue, but it is unfair on a general population if the tobacco industry is allowed to promote its products to the young and those who, you know, don’t know better in their country because it leads to people picking and taking up smoking at an earlier stage, becoming addicted. And, of course, their chances of having cancer in their lifetime is increased significantly. So, even on the risk factor side, you know, getting the information out there and making sure that governments understand where they are creating inequities in their country by not applying simple policies like increasing the taxation on packets of tobacco, that is a problem that needs to be resolved around the world.

So, I think our community love using World Cancer Day to talk about the global challenges that we have, but making it very real to the issues they face in their country and all very real on the subject in cancer control, which is very peculiar to their own organization. It’s a great day for bringing us all together because the outcome from all of that hopefully is less cancer patients and more successful treatment.

 

On your website, you mention the seven barriers that stand in the way of cancer care. What are they and why are they so important in the fight to rid the world of cancer?

Well, it’s important to describe what inequity is and where it emerges in society for people to understand it. So, as I said earlier, we are trying to get information out to our members because a lot of people think inequity is purely about high-income countries and lower-/middle-income countries. That’s what they think what inequity is. And the truth is it exists everywhere in society. I would recommend that anyone who’s interested in the subject matter should go to World Cancer Day website, and they can read about all of the areas of inequity, but they exist between gender. In countries. Women’s access to health. Full stop. Women’s ability to go into a health system. And a culture where it’s not deemed appropriate for a woman, potentially with breast cancer, to go to a hospital to actually reveal her body. This is inequity, so it’s not fair on the women. Children, gender; for young girls to have vaccinations for HPV to prevent cervical cancer in the longer term. OK. That has to be allowed around the world.

And then you’ve got issues about minority populations in a country where they don’t have access to the medical system or they don’t have access to the means to actually pay for their treatment. Refugees in countries and whether or not they have access to the health system where they have arrived, having left from their country. And then there’s a difference in the educated groups and those who don’t have access to education, and then knowledge and understanding of the health choices they take on every single day, which can affect their health in the future. And their ability to even pay for good quality food and their reversion to poor quality food because they don’t have the money or they don’t understand the long-term implications of doing that.

And, of course, there are also the differences I mentioned earlier between rural and urban. You know, the rural have often a long way to go to get access to treatment and care. Or they may not even have access to screening or primary health care, which allows them to identify their cancer earlier. Often in rural, it means leaving your work, leaving your family and going for treatment into an urban center, because cancer treatment centers tend to be in urban centers. And, of course, uncompounded on all the other challenges of the LBQT community, there is the challenge that there is on access to health and access to cancer advice and guidance.

So, all of those inequities which exist in society affect cancer outcomes, the ability to detect cancer early and the ability to get access to treatment and care. So, just to say, I would recommend anyone going to the World Cancer Day website, if they’re interested in the types of inequities that exist in society, which lead to inequities in access to treatment and care for cancer.

 

Dr Adams, thank you very much for your time and your insight.

World Leprosy Day 2022: An Interview with Dr Vivek V. Pai

During 2019 and 2020, the World Health Organization’s (WHO) Global Leprosy Strategy 2021–2030 “Towards zero leprosy” was developed. The core of the strategy is the interruption of transmission and the elimination of disease. Meanwhile, the COVID-19 pandemic seems to overshadow all other health problems, with scientists predominantly working on vaccines and cures for the virus.

On the occasion of World Leprosy Day on January 30 we talked to Dr Vivek V. Pai, a longtime expert on leprosy. He is the Director of the Bombay Leprosy Project and is fighting to keep leprosy on the agenda while drawing attention to the effects of this devastating disease.

 

Dr Pai, how many people are suffering from leprosy in India?

In India and the rest of the world, there has been a tremendous decline in the number of leprosy patients over the past four decades. However, one of the major challenges faced by India is the continued occurrence of new leprosy cases, evidenced by almost a static new case detection rate (NCDR) over the past decade. According to the report of the national sample survey and situational analysis done in 2015 by the National Leprosy Eradication programme (NLEP) India, the major issues to be addressed by the program were:

  • delay in case detection,
  • hidden caseloads,
  • low awareness regarding leprosy in the community and
  • the lack of quality monitoring.

These effects can be evidenced by the WHO’s weekly epidemiological report of 2019, which mentions that out of 202,488 new cases reported globally, 114,451 (57%) were contributed by India. In addition, in India, there are more than 3 million people with leprosy deformities needing attention and care for lifelong rehabilitation services.

“One of the major challenges faced by India is the continued occurrence of new leprosy cases.”

The WHO has drawn up a strategical road map from the year 2021 to 2030, focussing on a “zero leprosy” target. In 2020, although the prevalence of leprosy has gone down to 0.22 / 10,000 worldwide and to 0.66 /10,000 population in India, a total number of 202,488 new leprosy cases including 14,981 child leprosy cases were detected in the world.

India is still housing 114,451 (57%) of the new cases of the world. These data clearly indicate that despite the continuation of effective chemotherapeutic measures with multidrug therapy (MDT) for more than 4 decades, the transmission of the disease is continuing in the community. Leprosy being a chronic disease with a known long period of incubation (up to 20 years and more), a total elimination programme with a “zero leprosy” target may be too optimistic.

In 2020, the National Leprosy Eradication programme (NLEP) has revised its goals as follows and set annual targets:

  1. To reduce the prevalence rate to less than 1/10,000 population.
  2. To reduce grade II disability <1% among new cases at the national level.
  3. To reduce grade II disability cases <1 case per million population at the national level.
  4. Zero disabilities among new paediatric cases.
  5. Zero stigma and discrimination against persons affected by leprosy.

The key strategy to break the chain of transmission is to detect early the infectious type of leprosy cases, which is more difficult and challenging in the integrated setting.

 

Can you describe how leprosy damages the health, existence and prospects of those affected?

Even after medical treatment to cure the disease, many leprosy patients are left with visible deformities in/on the hands, feet and eyes, with wounds in the skin and amputated limbs. These patients require sustained disability care and services by way of physiotherapy and protective aids and appliances such as splints and special (i.e. micro-cellular rubber (MCR)) footwear to overcome the effects of disabilities and to prevent further worsening of the disabilities.

During and also after treatment some of the patients suffer from recurrent or chronic erythema nodosum leprosum (ENL) reaction/neuritis. This is an immune-based reaction which is extremely painful and debilitating, affecting the quality of life including the livelihood. These patients need additional medical management along with supportive measures to control the reaction and prevent the morbidity arising out of the disease in the community. Moreover, the deep-rooted stigma of leprosy still exists in the communities. It has been an underlying cause of social inequities faced by the people affected with leprosy, which in turn has been threatening their health, existence, prospects and livelihood.

“The deep-rooted stigma of leprosy still exists in the communities.”

What is done with regard to prevention, diagnosis, treatment and support – both physically and mentally?

Clinical diagnosis for identifying the cardinal signs remains the mainstay and is supported by skin smear. A skin test called skin smear is the only important tool to confirm and diagnose persons with the infectious type of leprosy. Upon confirmation of the diagnosis, the patients are started on WHO multidrug therapy blister-calendar packs for 6 months in paucibacillary (tuberculoid) leprosy and for 12 months in multibacillary leprosy. These drugs are provided free of cost by the WHO and the government.

Counselling, educating and reassurance of the patients on curing of the disease plays an important role to make them aware of the disease, of treatment adherence and compliance for completion of treatment. It underlines the importance of reporting back to the referral centres or clinics if there is aggravation of the disease or nerve pain or signs of nerve function impairment. This should happen early enough to get the condition examined and confirmed for reaction/neuritis, so that necessary treatment interventions can be started timely.

It is also important that post completion of treatment (i.e. released from treatment (RFT)), patients are to be followed up for identifying clinical events like reactions, nerve damage, disability and relapses of the disease as part of surveillance measures. For prevention of the disease, examination of all household contacts is done, and eligible contacts are given a single dose of rifampicin (SDR) chemoprophylaxis and are being observed.

“Counselling, educating and reassurance of the patients on curing of the disease plays an important role.”

How does the COVID-19 pandemic affect people diagnosed with leprosy?

The COVID-19 pandemic has impacted all health programs, and leprosy is no exception. The reallocation of staff and resources to limit the pandemic and the travel restrictions imposed have definitely affected the leprosy program. Nonetheless, efforts are made to reorient the leprosy program for active case detection and surveillance including drug delivery to patients and to overcome these temporary hardships to reach the desired goal of leprosy-free India. New case detection has dropped, while interruption of the treatment and follow-up,, compliance with treatment, identification of clinical problems and their management, as well as community programmes are all affected.

“The COVID-19 pandemic has impacted all health programs, and leprosy is no exception.”

In the current situation, what is done to implement the WHO strategy of “zero leprosy”?

The present global WHO strategy for 2021–2030 mentions that it plans to implement integrated, country-owned zero leprosy roadmaps for all endemic countries. This provides an opportunity for countries like India to choose strategies and remedies best required for it.

This WHO strategy, which was developed through a consultative process with all major stakeholders, reflects these epidemiological changes. Whereas previous strategies focused on the “elimination of leprosy as a public health problem” (defined as less than one case on treatment per 10,000 population), the new strategy focuses on interrupting transmission and achieving zero local cases. In doing so, the strategy aims to motivate high-burden countries like India and Brazil to accelerate activities while compelling low-burden countries to complete the unfinished task of making leprosy history.

 

Thank you very much for the interview and your insight.

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