Diversity and Ability (D&A): An Interview with Brian Lutchmiah and Piers Wilkinson

Diversity and Ability (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.

We spoke with Brian Lutchmiah and Piers Wilkinson about the work and achievements of their organization and their upcoming inaugural congress in December. Brian currently works as an Education Consultant for D&A and acted as the Manager of its Inclusive Education Team until recently. Piers 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.

This is the second interview of our two-part special featuring D&A. The first part featuring Piers Wilkinson focuses on UK Disability History Month, which runs from November 16 until December 16, 2022.

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

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

Waldenström Macroglobulinemia: Who Dares Wins. An Interview with Bob Perry (Patient / Patient Support Manager WMUK)

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 Bob Perry, who was diagnosed with WM in 2015 and treated with chemotherapy. Since then, he set up a support group, the Bournemouth and District WM Support Group aka the BAD WMers. He is also Patient Support Manager at the UK charity Waldenström Macroglobulinaemia UK (WMUK).

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

Movember 2022: “Changing the Face of Men’s Health”. An Interview with Anne-Cécile Berthier (Country Director UK & Europe)

The yearly event known as Movember involves growing moustaches throughout the month of November to bring attention to issues affecting men’s health like prostate cancer, testicular cancer, and men’s suicide prevention. Movember is a combination of “mo”, the Australian-English diminutive term for moustache, and “November”. The Movember charity event is managed by the Movember Foundation, while Movember’s mission is to “change the face of men’s health”.

To find out more about Movember, we got in touch with Anne-Cécile Berthier. She is Movember’s Country Director for UK and Europe, and has been campaigning for men’s health since 2017.

 

Please tell us about the idea for Movember and how the movement to raise awareness for men’s health has evolved.

Movember exists to stop men dying too young by tackling some of the most complex health issues facing men today – mental health, suicide, prostate cancer and testicular cancer.

Movember funds and delivers biomedical research, cancer survivorship programs, innovative community mental health programs and digital health products that work for men. What started as a single-minded fundraising and awareness campaign in 2003 has evolved into a multi-faceted health organization with programs accessed by millions worldwide. We’ve made epic progress in men’s health, but every whisker of credit goes to our Mo Bros, Mo Sisters and Mo Communities around the world – they’re all truly inspirational.

 

What are your activities regarding men’s mental health and suicide prevention?

Globally, on average, 1 man dies by suicide every minute of every day – that’s over half a million fathers, partners, brothers and friends each year. Suicide prevention is one of the biggest public health challenges of our time but how and why suicides happen is incredibly complex.

At Movember, we’re constantly working towards a world where men take action to be mentally well, and are supported by those around them. And so that’s our mission. To get there, we’re uniting experts, funding bold new approaches and embracing fresh perspectives. Starting a conversation with men who are struggling with their mental health can sometimes feel a little daunting, and so to help build that confidence, Movember has created Movember Conversations – a free, interactive digital tool that presents a number of scenarios relevant to today’s world. Using simulated conversations, Movember Conversations helps people to explore and practice how anyone might navigate a difficult conversation with someone they care about.

 

What are you doing to raise awareness for prostate cancer?

Globally, more than 1.4 million men are diagnosed with prostate cancer each year. Men over 50, black men, or those whose father or brother had the disease are at even greater risk. If caught early, prostate cancer can be very treatable, and so men are urged to check their risk “without delay” so it can be found before the cancer spreads.

In addition to funding critical biomedical research, Movember also fund True North – a global prostate cancer program that seeks to significantly improve the lives and experiences of men with prostate cancer. Available in 7 countries, the platform provides men:

  • with a place to share their prostate cancer experiences;
  • understand the latest knowledge on care and treatment;
  • guide men, doctors, partners and caregivers to make key decisions as a team; and
  • discover ways to improve care and support for men living with and beyond a diagnosis.

Prostate cancer facts can also be found on the website to raise awareness of who’s at risk, the importance of getting a PSA test (a routine blood test), signs, symptoms and side effects of prostate cancer as well as understanding the current treatments that are available.

 

Source: Movember.com

Source: Movember.com

 

What is your approach towards testicular cancer?

Testicular cancer is the most commonly diagnosed cancer in young men aged between 15 and 34, but 62% of those who are most at risk don’t know how to check themselves. However, Movember has it covered.

To ensure every male understands the correct procedure for checking their nuts, Movember has published “How-to” guides for frequent examinations. When caught early, testicular cancer is highly treatable and highly curable, and so the purpose of these guides is to encourage those who notice change to act accordingly. Nuts & Bolts is another guide Movember has created to support those during their testicular cancer journey. From diagnosis, to treatment, to life afterwards, the Nuts & Bolts tool kit provides each male with the right information to support them on their testicular cancer journey.

 

What can women do to support men’s health?

There are many ways not just women, but friends and family members can support men’s health. Whether that’s by growing a moustache, running or walking 60 km over the month, hosting a Mo-ment or deciding to Mo Your Own Way and taking part in an endurance test – every activity contributes to making significant impact towards changing the face of men’s health.

 

What are your plans for this year’s awareness month? Any surprises such as moustaches for planes?

This year and beyond we are continuing to raise awareness of men’s health issues by encouraging our Mo Bros and Mo Sistas to Grow a Mo, Move for Movember, Host a Mo-ment or to Mo Your Own Way. As for November 2022, you can expect to see more moustaches than ever before, so keep your eyes peeled for your Mo’s across town.

 

Many thanks for the interview and for your time!

World Patient Safety Day 2022: An Interview with Prof. Sir Liam Donaldson (Patient Safety Envoy WHO)

For World Patient Safety Day 2022 on September 17 we got in touch with Professor Sir Liam Donaldson. He is the World Health Organisation’s Envoy for Patient Safety as well as Professor of Public Health at the London School of Hygiene and Tropical Medicine. Previously, he served as the United Kingdom’s Chief Medical Adviser and as England’s 15th Chief Medical Officer.

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.

Prostate Cancer Awareness Month 2022: An Interview with Sally Sara (Prostate Cancer Specialist Nurses of Australia)

For Prostate Cancer Awareness Month, which is held in September each year, we got in touch with Adjunct Professor Sally Sara, Director of Nursing Programs for the Prostate Cancer Foundation of Australia (PCFA), to find out more about the Prostate Cancer Specialist Nurses of Australia.

 

What does it take to become a Prostate Cancer Specialist Nurse?

Being a Prostate Cancer Specialist Nurse (PCSN) is all about having a passion for supporting men and their families through all stages of prostate cancer diagnosis, treatment and beyond.

PCSNs are often the first point of contact for men who are newly diagnosed, and they continue to be a vital source of information and support from navigating treatment, to seeking referrals, and managing treatment side effects for the months and years that follow.

Our PCSNs are all qualified nurses with experience in urology, oncology or other relevant areas of healthcare. On joining our program, they undertake an in-depth prostate cancer nursing e-learning course and participate in a robust annual professional development program.

“Prostate Cancer Specialist Nurses are often the first point of contact for men who are newly diagnosed.”

What are the tasks of a Prostate Cancer Specialist Nurse, and can any patient contact you when in need?

PCSNs are available to access for all men in Australia diagnosed with prostate cancer. We have over 100 nurses in locations across Australia, plus a dedicated team available via telephone. Prostate Cancer Foundation of Australia (PCFA) nurses:

  • Provide clear and consistent evidenced-based information and resources about all aspects of prostate cancer.
  • Help men to understand their diagnosis, treatment options and ways they can manage side effects.
  • Provide men with support to make informed decisions about their health.
  • Offer relevant practical and emotional support tailored to their prostate cancer needs.
  • Link men with local support networks including Prostate Cancer Support Groups, PCFA’s Prostate Cancer Counselling Service, and peer-support programs.
“Prostate Cancer Specialist Nurses are available to access for all men in Australia diagnosed with prostate cancer.”

Which role does the Prostate Cancer Specialist Nursing Service play, also in connection with the Prostate Cancer Foundation of Australia (PCFA) and when working as multidisciplinary teams?

PCSNs, placed in health services across Australia, are supported by the PCFA working in partnership with their employing local hospital or health network. PCSNs are an integral member of health service multidisciplinary teams and work closely with all relevant health professionals to provide a high level of patient care to men diagnosed with prostate cancer.

“Prostate Cancer Specialist Nurses are an integral member of health service multidisciplinary teams.”

Please let us know more about the Prostate Cancer Specialist Telenursing Service.

PCFA’s Prostate Cancer Specialist Telenursing Service was first launched in March 2021 to meet an increasing demand for accessible prostate cancer services. Through the telenursing service, all Australians impacted by prostate cancer, no matter where they live, can now have access to a Specialist Nurse simply by picking up the phone.

Our Specialist Telenurses are all qualified nurses with training and experience to support men through a diagnosis, and provide information on everything from treatment options to management of side-effects and referrals to other health care professionals.

“The Prostate Cancer Specialist Telenursing Service was launched to meet an increasing demand for accessible prostate cancer services.”

In addition to other challenges, what is the impact of prostate cancer on the mental health of both patients and their families/caregivers?

Prostate cancer is the leading cause of cancer in Australia, with over 24,000 men diagnosed with the disease every year.

With over 240,000 Australian men alive today after a prostate cancer diagnosis we know that one in five of those men will experience anxiety or depression as a result of their diagnosis. Of concern, patients also face a 70% increased risk of suicide death.

Right now, 72% of men also don’t seek support for their distress which urgently needs to change.

Our PCSNs, Telenurses and Counsellors are helping to address the problem and help reduce the distress experienced by men with prostate cancer and their loved ones.

“We know that one in five Australian men with a prostate cancer diagnosis will experience anxiety or depression as a result of their diagnosis.”

To which extent do you participate in events, such as Prostate Cancer Awareness Month in September?

Prostate Cancer Awareness Month is a major month on our calendar and we encourage people right across the globe to use it as an opportunity to help raise awareness of prostate cancer and encourage more men to speak to their doctors about their testing options.

People across the world can also join “The Long Run”, a unique challenge which encourages individuals and teams to run, walk or wheel 72 km throughout September to make a difference and help end the pain of prostate cancer. People can register here.

 

Many thanks for your time and for the interview.

“A Typical Cavernoma Looks Like a Raspberry”: An Interview with Ailsa Crowe (Cavernoma Alliance UK)

A cavernoma is a cluster of abnormal blood vessels, usually found in the brain and spinal cord. They are sometimes known as cavernous angiomas, cavernous hemangiomas, or cerebral cavernous malformation (CCM). It is a rare condition, typically looks like a raspberry, and is filled with blood that flows slowly through vessels that are like “caverns”. A cavernoma can range in size from a few millimeters to several centimeters across.

We got in touch with Ailsa Crowe, Digital Content Producer at Cavernoma Alliance UK (CAUK), to learn more about the condition.

 

First of all, what is a cavernoma, and which symptoms are associated with it?

A cavernoma is an abnormality in a blood vessel in the brain or spinal cord – it looks like a raspberry. About 1 in 600 people has a cavernoma – but most people will never know it’s there. It is only when the cavernoma grows or bleeds/oozes blood that it causes problems. A cavernoma that grows or bleeds – a symptomatic cavernoma – can cause a variety of symptoms depending on its size and location in the brain or spine.

The most common first symptom of cavernoma is seizure – many people live with epilepsy as a result of their cavernoma bleeding. Other predominant symptoms include haemorrhagic stroke and focal neurological deficit, like a stroke but without new bleeding on a scan. These in turn cause symptoms such as dizziness, slurred speech, double vision, muscle paralysis/weakness, tremor and numbness, which may also lead to extreme fatigue, memory and concentration difficulties, headaches, and other symptoms.

The severity of symptoms and persistence of bleeding determines the type of treatment available for cavernoma patients. Often, doctors consider the best approach to be what is called “watch and wait” where the behaviour of the cavernoma is monitored over time, and medication given to alleviate difficult symptoms. When the severity of symptoms and the risk of re-bleeding outweigh the risks associated with surgery, a doctor may recommend treatment, usually neurosurgery to remove the cavernoma, but sometimes Gamma Knife surgery (also known as stereotactic radiosurgery) – a less prevalent procedure that “zaps” the cavernoma with radiation.

 

Cavernoma symptoms (source: Cavernoma Alliance UK)

 

Your Strategic Plan includes three objectives: Care, Response, Cure. Please tell us more about these aspects.

The CAUK Strategic Plan was approved at the January 2022 Board Meeting, with three parts: Care, Response, Cure. We deliver on our Mission via the five programmes of our Action Plan.

Care

  • Direct support for adults (68% of our membership base are adults with cavernoma).
  • Direct support for children and young adults with cavernoma and their families (4.2% of our membership are parents of children with cavernoma).

Response

  • Raising awareness of this rare condition with medical and social care professionals.

Cure

  • Aiding both UK and international research to improve the care and treatment of cavernoma and find a cure.

Underpinning Operations

  • People: internal (our staff), external (our members, our volunteers and the public).

 

What is the physical and mental impact of cavernoma on those affected by it?

The physical and mental impact of cavernoma goes beyond what we could capture in just a couple of paragraphs. As with many conditions that affect the brain and spinal cord, the impact of the condition varies greatly depending on exactly where a cavernoma, or multiple cavernomas, are located. As we mentioned before, cavernomas can grow or bleed, causing devastating consequences – including haemorrhagic strokes, seizures, paralysis and sensory problems (to name but a few). Bleeds cannot be predicted, and there is no cure for cavernoma.

On top of having to manage the difficult physical consequences of a cavernoma growing or bleeding, the anxiety caused by not knowing when symptoms might worsen means patients often experience long-lasting mental health difficulties. A cavernoma diagnosis can affect an adult’s ability to maintain gainful employment, which can have devastating effects on financial stability and self-esteem. For children, diagnosis can severely affect their confidence, therefore limiting their ability to progress academically in school and make friends and socialise in the same way as their peers.

With only one in 5,000 people affected by symptoms, symptomatic cavernoma are rare. Those with the condition will seldom meet others with cavernoma (except through the wonderful cavernoma community at CAUK), leaving adults and children alike feeling isolated and alone.

Symptomatic cavernoma can be a sporadic or familial disease. When a patient has more than one cavernoma it usually indicates that they have the genetic form of cavernoma: There is a 50% chance that a parent with the genetic cause might pass the gene on to their child. Thus, in many cases several generations of the same family live with multiple cavernomas in their brain, many of which will cause difficult symptoms. It goes without saying that the many challenges associated with this familial strain can be devastating.

 

Cavernoma community (source: Cavernoma Alliance UK)

 

Are there currently any trials being undertaken (such as the CARE study), and which new treatments for cavernoma are on the horizon?

Cavernoma is a rare condition for which research is relatively young. It only became possible to diagnose cavernoma with the advent of magnetic resonance imaging (MRI) in the 1980s. In those early days MRI machines were not nearly as common a resource as they are now.

Since there was no means for diagnosis, cavernoma was a poorly known condition – it was in effect a “new” ailment with no history. It is only gradually over the last just 4 decades that clinicians have learned to associate certain symptoms with the presence of cavernoma.

We are happy to report that research into cavernoma and potential treatments has gained significant momentum over the last years. There are a number of active research trials taking place as we speak, including the CARE study – for which CAUK is the patient group and was heavily involved in its design.

The CARE study, the first ever pilot clinical trial for cavernoma, seeks to determine the best treatment option for patients with symptomatic brain cavernoma. It aims to answer the question “How effective is treatment with neurosurgery or stereotactic radiosurgery versus treatment without surgery in people with symptomatic brain cavernoma?”. You can read all about it via our website.

In terms of potential new treatments for cavernoma, there are currently three exciting randomised controlled trials (RTCs) underway internationally, testing the following repurposed and completely new drugs for effectiveness in treating cavernoma:

  • Propranolol (Italy, repurposed drug).
  • Atorvastatin (USA, repurposed drug).
  • Rec994 (“Sycamore Trial” – USA, new drug).

In addition to these RCTs, there is a substantial amount of cavernoma treatments which may lead to trials in the next year or so, in particular for biomarkers. Our sister organisation in the US – Alliance to Cure Cavernous Malformation – has, for example, recently announced their participation in early “animal model” research on the potential promise of focused ultrasound as a minimally invasive treatment for cavernoma.

We are hopeful for the future!

 

Please tell us more about the “CaverBuddies” mentioned on your website.

“CaverBuddies” is a Peer Support Scheme which matches up fully trained and DBS checked1 volunteers from our cavernoma community with people who are in need of support. With cavernoma, a rare condition that few people – even many clinicians – have ever heard of, we find that some of the best support comes from others affected by cavernoma who have a similar lived experience.

A person’s cavernoma symptoms and experience differ significantly depending on which part of the brain their cavernoma is in. Our matching process ensures that our trained volunteer and the person in need of support have similar cavernoma background and symptoms, so that the experience is as beneficial as possible. The “CaverBuddies” scheme helps people to navigate their diagnosis and cavernoma journey, feeling less alone and more in control.

 

Many thanks for your time and for the interview.

1In order to be eligible for a Disclosure and Barring Service (DBS) check, a volunteer must be undertaking unpaid work for the benefit of an unrelated third party, with no intent to gain anything in return. They must also be working in a regulated activity with children or vulnerable adults.

Shine Night Walks: An Interview with Gareth Mulcahy (Cancer Research UK)

From August to October, thousands of people across the UK will come together to take part in Shine Night Walks to raise money for life-saving cancer research. These spectacular walks take place in some of the UK’s loveliest cities, taking in local and national landmarks that have been lit up to make the night truly special. To sign up, visit shinewalk.org.

 To find out more about these events and the impact they have on cancer research, we turned to Cancer Research UK’s head of events and sport, Gareth Mulcahy.

 

Source: Cancer Research UK

 

What is the history of Shine Night Walks?

Our Shine Night Walks have been running for 12 years – the first ever event took place in Manchester in 2010 and saw 7,400 people take part in a walking marathon through the city’s streets at night. The event raised GBP 1.7 million and kick-started Shine Night Walk as we know it today. In 2011, we added London and Glasgow to the schedule, and we’ve continued to grow ever since.

This year, Shine Night Walks will take place in 19 cities across the UK, with 23,000 people walking through the night to help beat cancer. All cities offer a 10 km route, and our London Shine Night Walk has half marathon and full marathon options, too.

 

What is the main attraction for people to take part in a Shine Night Walk?

Shine Night Walk is no ordinary event, it’s an exciting and magical night-time walk. As well as passing some of the UK’s most famous landmarks, it allows people to see and experience their city in a whole new way. People often enjoy doing it as a group, or team, so it’s a fun social occasion, too. All Shine Night Walk events are non-competitive, and participants are encouraged to walk at their own pace. There is always a great atmosphere.

Of course, a lot of people who take part have been affected by cancer, either having experienced it themselves or because they know someone who has had a cancer diagnosis. Shine Night Walks offer the chance to celebrate and remember people while raising money for research that will save lives.

Everyone who signs up is given the option to fundraise for all cancers or choose an area or type of cancer research to fundraise for.

 

Source: Cancer Research UK

 

Why do people have to pay in order to take part in a Shine Night Walk?

Entry fees help with the cost of putting on the event.

 

Once a person has signed up, they will receive a Shine Night Walk pack. What is in the pack?

All participants receive a Shine Night Walk pack, which includes a unique walker number, a t-shirt, a course map and a back sign to write specific reasons for taking part, or share a tribute to someone special.

We’re making conscious efforts to be more sustainable, so we’re sending fewer printed materials this year. You can, however, visit our website to download extra materials such as a fundraising pack with lots of useful information and ideas, posters, and more.

  

How can people support Shine Night Walks without taking part in the walk itself?

As well as taking part, there are other ways that people can support Shine Night Walks, including volunteering. Our volunteers are beacons in the dark, offering participants encouragement throughout the challenge and cheering them on. The volunteering roles include helping set up the course, guiding supporters around the cities, and handing out well-earned refreshments. We simply couldn’t run the events without them. There is more info about volunteering here.

People can also help promote Shine Night Walks by sharing their experiences of cancer by signing up to be a media volunteer. A lot of people sign up to our events after reading about people’s lived experiences. Full details can be found here.

 

Source: Cancer Research UK

 

How are Shine Night Walks helping Cancer Research UK to achieve its goals?

At Cancer Research UK, we rely on the generosity of our supporters to fund our life-saving research into the prevention and treatment of all types of cancer. 1 in 2 of us will get cancer in our lifetime. Everyone who takes part and fundraises through the Shine Night Walk will help Cancer Research UK bring about a world where everybody can lead longer, better lives, free from the fear of cancer.

 

Are there equivalents of Shine Night Walks on an international scale?

We don’t have any Shine Night Walks outside of the UK. There are international challenge events which will allow participants to fundraise for their chosen charity.

About Cancer Research UK

Cancer Research UK is the world’s leading cancer charity dedicated to saving lives through research, influence and information. We want to accelerate progress and see 3 in 4 people surviving their cancer by 2034.

 

Many thanks for your time and for the interview.

Gastroparesis Awareness Month 2022: An Interview with Hayley McCorkle (International Foundation for Gastrointestinal Disorders)

Gastroparesis, commonly known as delayed gastric emptying, is a condition in which the stomach does not empty completely. In the absence of any obvious obstruction or blockage, gastroparesis is defined by the presence of specific long-term symptoms as well as delayed stomach emptying.

On the occasion of Gastroparesis Awareness Month, which is observed in August, we turned to Hayley McCorkle, Program Manager at the International Foundation for Gastrointestinal Disorders (IFFGD). The organization seeks to bring vital health messages about gastroparesis diagnosis, treatment, and quality of life issues to the public’s notice. Improved understanding of gastroparesis will aid patients and families in managing the illness, as well as the promotion of preventive initiatives.

 

What are the symptoms of gastroparesis?

Gastroparesis is a condition of slowed stomach emptying with no intestinal blockage that can vary from life-limiting to life-threatening. Healthcare providers often refer to it as delayed gastric emptying. This is a motility disorder where the stomach does not empty food as quickly as it should. Symptoms usually occur during or after a meal and can appear suddenly or gradually.

Symptoms of gastroparesis typically include:

  • nausea and/or vomiting,
  • stomach pain and discomfort,
  • dry heaves,
  • stomach fullness after a normal-sized meal,
  • early fullness and the inability to finish a meal.

Additional symptoms, such as bloating, stomach discomfort or pain, loss of appetite, and heartburn, among others, may occur. Left unmanaged, gastroparesis can lead to additional complications, including severe dehydration, obstruction, poor insulin control in individuals with underlying diabetes, and malnutrition due to poor absorption of nutrients.

“Gastroparesis is a motility disorder where the stomach does not empty food as quickly as it should.”

Why is gastroparesis commonly misunderstood and often misdiagnosed?

We may not know why gastroparesis is commonly misunderstood, but we do know that the symptoms are very similar to other illnesses, which can make it difficult for a provider to make an accurate diagnosis. Despite many researchers who have joined forces to learn more about this gastrointestinal condition and the burden posed on those affected, little remains known, and many face diagnostic delays. Those who live with gastroparesis suffer an average of five years before receiving the necessary answers and care. Patients may experience multiple misdiagnoses during this time, undergoing numerous hospitalizations and diagnostic tests. Researchers around the world are still investigating and searching for answers. So, those living with gastroparesis are not alone, and we are hopeful that there is light at the end of the tunnel.

“The symptoms are very similar to other illnesses, which can make it difficult for a provider to make an accurate diagnosis.”

How is gastroparesis treated?

The treatment of gastroparesis in an individual often depends on the severity of symptoms. Treatment options typically aim to manage symptoms over a long period.

Treatment options for those living with gastroparesis may include:

  • dietary and lifestyle measures,
  • medications, and/or
  • procedures that may include surgery, such as
  • enteral nutrition,
  • parenteral nutrition,
  • gastric electrical stimulation (Enterra), or
  • other surgical procedures.

No single treatment helps all persons with gastroparesis. It is important to speak with a healthcare provider to determine the best treatment option for you.

“No single treatment helps all persons with gastroparesis.”

How does gastroparesis impact the lifestyle and quality of life of those affected as well as of their families and friends?

Gastroparesis is a long-term condition that can impair quality of life and well-being. Living with gastroparesis affects those who suffer and many others, especially family members and friends. It also touches on relationships in the classroom, workplace, or social interactions. It takes skills and strengths to deal with a challenging digestive condition like gastroparesis. It means being a kind of active researcher, always looking for what does and does not help, hurt, and work best. It is important for patients and their caregivers to understand the condition and to advocate for better health. If you or a friend or loved one has gastroparesis, it is also important to understand that you are not alone with this diagnosis.

“It is important for patients and their caregivers to understand the condition and to advocate for better health.”

What is the advice of patients living with gastroparesis regarding self-care, prevention and risk management?

Although the cause of gastroparesis is commonly unknown (idiopathic), in about 1 in 4 people, it can occur as a complication of long-standing diabetes. With that said, many things can affect the health of individuals. Some things are out of their control, and some they can control. Outside of making healthy lifestyle modifications, living with gastroparesis will push individuals to look for what works best for them at different periods of their life. Developing the best treatment or management plan with a healthcare provider can help improve their health-related quality of life. When a person with gastroparesis takes preventive steps it can help ease symptoms, lessen the unwanted effects on daily life and enhance the well-being for patients.

Some preventive steps may include:

  • working with a gastrointestinal specialist who is familiar with gastroparesis,
  • developing a multidisciplinary healthcare team that includes a registered dietitian to assist with meal planning,
  • eating frequent small meals,
  • staying hydrated,
  • assessing the risk and benefit of all treatment plans with your healthcare provider etc.

It is important to seek appropriate care and take an active role in your health. Working along with your healthcare team will help control, reduce, or prevent symptoms and complications.

“Living with gastroparesis will push individuals to look for what works best for them at different periods of their life.”

What are your plans for this year’s awareness month?

In recognition of Gastroparesis Awareness Month, IFFGD will launch a campaign to acknowledge the challenges of living with gastroparesis — symptom burdens, finding the right treatment options, and lifestyle modifications — using the hashtag #LivingWithGP on all social media channels. During Gastroparesis Awareness Month, we invite you to share your gastroparesis story and make your voice heard using the hashtag #LivingWithGP. IFFGD’s Gastroparesis Awareness Month materials include a media toolkit with statistics and key messaging to post on social media, one campaign poster, one website banner, and social media images. Please contact IFFGD if you are interested in receiving the 2022 gastroparesis awareness campaign material.

 

Many thanks for your time and for the interview.

Appendix Cancer Awareness Month 2022: An Interview with Dr. Paul Sugarbaker

Appendiceal cancer is very rare. It is estimated that approximately 1 or 2 people per million in the United States are affected by primary appendix cancer each year. However, according to recent studies, appendix cancer as such is becoming more common. It occurs more often in adults aged 50 to 55 years, but it can arise at any age. There are various types of tumors that can start in the appendix, for example neuroendocrine tumors, appendiceal mucoceles, colonic-type adenocarcinoma, etc.

On the occasion of Appendix Cancer Awareness Month, which is observed in August, we spoke with Dr. Paul Sugarbaker, one of the leading appendix cancer/pseudomyxoma peritonei (PMP) specialists worldwide. He is the Secretary General of the Peritoneal Surface Oncology Group International (PSOGI) and a pioneer of the HIPEC (Hyperthermic Intraperitoneal Chemotherapy) therapy, or the Sugarbaker procedure.

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.

The Vitiligo Patient Journey Map: An Interview with Yan Valle (CEO Vitiligo Research Foundation)

On the occasion of World Vitiligo Day, which is observed on June 25 every year, we got in touch with Yan Valle, CEO of the Vitiligo Research (VR) Foundation, at the 3rd VIPOC (Vitiligo International Patient Organizations Committee) conference in Amsterdam, The Netherlands. In the follow-up to our interview from last year, we spoke about the Vitiligo Patient Journey Map, which was published by the VR Foundation in December 2021, and about how the patient journey as such has changed in the course of time.

 

Please tell us more about the idea to create such a Vitiligo Patient Journey Map and for which patients you would recommend it.

Patient journey maps have been used throughout healthcare for a very long time. A traditional map describes a patient’s experience as they live through the disease in general, or progress through the particular healthcare environment. The typical journey begins with the symptom manifestation, then goes through pre-defined stages of diagnosis, treatment and follow-up for a certain disease. Essentially, it is a provider-centered view, with business efficiency in mind.

Right around the World Vitiligo Day last year I was thinking: What if we flip the map and put the patient in the center? Then, we should lay out before them every option available: from the first disease encounter to their satisfaction with results. We would have to visualize the entire landscape, highlight the best routes, indicate decision points, mark known pitfalls and put in estimated “time to destination”. Above all, it should be pragmatic yet optimistic – a kind of antidepressant for a stressed-out patient.

After five or six attempts involving three designers we have put all of that on the map, with some touch of humor. The Vitiligo Patient Journey starts, like in real life, long before the patient ever steps into a dermatologist’s office. Often prior to the proper vitiligo diagnosis, patients are exploring “Dr. Google”, chatting on Facebook or leveraging social media to evaluate their situation. Once they go past the initial shock and fear of the unknown, they start questioning the treatment process itself, in the view of forthcoming expenses and real-life outcomes.

This is where the Vitiligo Patient Journey Map becomes handy; thus it needs to be seen by patients, their relatives and friends, support groups, family doctors and dermatologists. I promoted it at this year’s VIPOC conference through leaders of vitiligo patient groups and doctors. It is meant to be hung on the wall, to draw people’s attention and to spark open discussion about different paths, treatment options and outcomes.

Vitiligo Patient Journey Map (source: VR Foundation)

How and in which context can it be used by patients?

It can be used as a bird’s eye view of the patient journey, first to have a quick sense of time and direction. We see two major routes on the Map leading to totally different outcomes – I call them “Spotless” and “Beautiful” – with multiple stops, loops and hidden connections in-between, some bearing timestamps.

What would it take to get from here to there and what time would it take? Take, for example, a range of medical treatments. How much effort do you need to commit to this or that route? And that’s a very important decision to make because it may take months or even years to get to one’s destination. A scientifically minded patient can explore all the opportunities further and discuss them with a dermatologist.

 

In your opinion, what does the patient journey in the digital age look like?

The patient journey looks a lot more messy and chaotic nowadays than it was before. Not such a long time ago, there was just one doctor – or “polyclinic” in some places – that you would go for diagnosis and treatment. Today, patients are actively involved in their own care, yet sometimes with dire consequences.

They can get tons of free advice instantaneously, so they try to cover all the bases at once: Instagram, “Dr. Google”, friends and families. And these opinions are frequently incompatible, often none of them being right. Then, they start looking for a “health expert” – labeled Dr. Foggy on our Map – to make sense of that chaos. Finally, the wisest of them would start looking for a specialist – that we call Dr. Bright – while the rest would go around the Vicious Circle of misguided treatments, as indicated on the map, or drop out completely.

Our fully interactive Vitiligo Patient Journey Map aims to mitigate shortcomings of both the “old-school” and “modern messy” patient journeys; it will be available online later this year.

 

What is the difference between a traditional (treatment-driven) and modern (patient-driven) journey, how has this changed in the course of time and what should change in the future?

Most of the patient journey maps were designed by pharma or healthcare industry to demonstrate the flow of patients through stages of their product or service use. It doesn’t always take in mind what’s best for the patient. It also overlooks emotional, behavioral and lifestyle factors influencing the patient’s decisions.

Traditionally, patients had no choice or even knowledge of their options. They would come to the hospital or dermatological clinic and then they would use whatever was offered by this particular place. Today, they know that there are different options available. They request some more information before they make the right decision, but not every doctor is ready to give it to them out of own lack of experience or concern for their unsupervised self-treatment.

For example, you go to your family physician, and back in my days this is what happened. Our family doctor told us, “Oh, vitiligo is incurable. Forget about treating it”. And my parents agreed, “Okay, if it’s uncurable, there is not much we can do about it”. They have never sought a second opinion because they trusted their family physician.

Fast forward 15 years. A new family doctor told us there are different treatment options, and they were there back in those days. But I missed the proper time and it is too late for me to begin treatment now. I did it anyways, for several years, but it didn’t work for me.

With this Patient Journey Map, I want to help new patients avoid getting in the same situation. They should know that there are different treatment options available. Here are the routes, with common pitfalls and travel times. And if you feel like your family physician or your dermatologist are not experienced in vitiligo, just ask them to take a look at the map together. That’s how the decision-making landscape has changed.

 

What are your next goals concerning the Vitiligo Patient Journey Map and World Vitiligo Day on June 25th?

My plan for the Vitiligo Patient Journey Map is to make it interactive, zoomable down to the smallest detail. Next, our goal is to map areas with potential triggers that lead to disease onset. Being aware of vitiligo risk factors and comorbidities – it is called Dermatology Transit on our map –, patients can take precautions to prevent or delay onset of the disease.

The Vitiligo Patient Journey Map in its present form is supposed to be printed and put on the wall at the patient support group meeting, dermatology clinic, conference and so on and so forth. We have the full-size file available for download on our website. Anyone can download and print it – poster size – for the price of a fancy coffee.

The map is already translated in several languages, and there are more to come. We will have it soon in German, Italian, Spanish, French and Russian. Maps in these languages will be available for download by June 25th. And we can also customize it and put a patient support group logo on the map upon request, so all group members would feel connected through the map. We can even reasonably adjust it, to account for differences of national healthcare systems – like in the USA and UK – and for the local sense of humor.

 

Many thanks for your time and insight!

World Scleroderma Month 2022: An Interview with Sue Farrington (CEO Scleroderma & Raynaud’s UK)

Scleroderma, meaning “hard skin” in Greek, is a rare autoimmune condition that causes skin and tissue to thicken and become stiff and tight. In more severe cases, other organs like the heart and lungs can also be affected. Scleroderma Awareness Month is held every June while June 29 is World Scleroderma Day – these provide valuable opportunities to raise awareness of this condition. World Scleroderma Day is held in memory of Swiss artist Paul Klee, who lived with and was strongly influenced by systemic scleroderma, and who died on June 29, 1940.

Of note, Raynaud’s phenomenon is often a common symptom of both types of scleroderma, i.e. localized (affecting only certain parts of the body) and systemic scleroderma, which affects the whole body.

On the occasion of both Scleroderma Awareness Month and World Scleroderma Day we spoke with Sue Farrington, CEO of Scleroderma & Raynaud’s UK (SRUK).

 

In scleroderma, no two patients are truly alike. Why?

Scleroderma is a rare autoimmune condition that affects around 19,000 people in the UK and 2.5 million worldwide. Everyone’s experience of scleroderma depends on what type they have, how severe it is, and what parts of their body are affected.

Scleroderma occurs when the immune system becomes overactive and starts to attack healthy tissue in the body, causing hardening of the skin and affecting joints and, in more severe cases, internal organs. Scleroderma can also cause scarring that can stop parts of the body from functioning properly.

There are two main types of scleroderma: localised and systemic sclerosis. Localised scleroderma only affects the skin whereas systemic sclerosis is more severe and can affect other organs such as the heart, lungs and digestive system. In the most serious cases it can be life-threatening.

This is why it’s vital that people with the condition receive good information, support and care tailored to their own condition and experience.

“Scleroderma occurs when the immune system becomes overactive and starts to attack healthy tissue in the body.”

On your website, the motto “#KnowScleroderma – Educate, Engage, Empower” is given. Why are these pillars important?

As scleroderma is a relatively rare condition, public awareness is low. Many people don’t know the signs and symptoms to look out for, what to expect once they’ve been diagnosed, what treatments are available or how the condition could affect them in the future.

Scleroderma may be uncommon, but it can be a life-changing condition for many, so it’s crucial that everyone gets the information and support they need to continue to live well and help them make informed decisions about their care.

As a charity dedicated to supporting people with scleroderma, SRUK seeks to

  • educate the public by raising awareness of the signs and symptoms
  • engage with people through our Helpline, website, webinars and other online activity so they can access information and support, and
  • empower those who are concerned to seek a diagnosis, ask questions and self-manage their condition better.
“Scleroderma may be uncommon, but it can be a life-changing condition for many.”

What is vital for the (timely) diagnosis and treatment of patients with scleroderma?

Early diagnosis and treatment of scleroderma cannot be underestimated. The condition often affects the body before symptoms appear, and any damage to the body that occurs before treatment starts is irreversible.

However, for many people it can take up to five years on average to receive a diagnosis. This is largely due to a general lack of awareness of scleroderma among healthcare professionals, inconsistent access to specialist care and problems with the coordination of care across different healthcare teams.

We are working to close this gap by funding research to improve diagnosis as well as treatments and quality of life for those with scleroderma. We also engage with leading healthcare professionals to share information, advice and best practice to the wider workforce.

“Early diagnosis and treatment of scleroderma cannot be underestimated.”

What can patients, their caregivers and their loved ones do when they are or someone close is living with scleroderma, for example regarding their quality of life?

Once someone has received a diagnosis of scleroderma, the first thing I would recommend is not to search for information on the internet. Not all information online is accurate, and it can do more harm than good.

For reliable and trusted information about scleroderma, visit our website. You will be able to find out more about how the condition is monitored, how it can affect the body and the treatments available. There is also a section to help people manage their condition, including the importance of a healthy diet and getting enough sleep.

Scleroderma can affect both adults and children and due to the nature of the condition, it’s important that others are aware of the impact it can have, both physically and emotionally.

With this in mind, we have produced helpful guidance for both schools and employers to help them understand what scleroderma is, how it can affect people at school or at work, and what their responsibilities towards their students or colleagues are. These can be downloaded here.

Scleroderma Awareness Month: 3 symptoms of scleroderma (source: Scleroderma & Raynaud's UK)

What are your plans for the upcoming Scleroderma Awareness Month as well as World Scleroderma Day on June 29?

During Scleroderma Awareness Month, we will be raising awareness by sharing stories from people who are living with the condition or have loved ones with scleroderma. We have some very moving and inspirational stories from our community, which we will be sharing across traditional and social media.

We will also be encouraging the public to support us by getting involved with the SRUK Walk – a month-long fundraising campaign where we ask people to organise a walk and raise funds. It’s their walk, their way, to help us make a difference to everyone living with scleroderma and Raynaud’s. You can find out more by visiting our website.

 

Many thanks for your time and for the interview.

World Kidney Cancer Day 2022: An Interview with Anne Wilson (International Kidney Cancer Coalition (IKCC))

This year, June 16 is World Kidney Cancer Day (WKCD). It is a day when the world’s kidney cancer community joins together to raise awareness about major issues affecting kidney cancer patients and their caregivers. For its current edition, the focus is on talking about treatment options for kidney cancer patients.

For World Kidney Cancer Day 2022 we got in touch with Anne Wilson, Board Member of the International Kidney Cancer Coalition (IKCC) and responsible for WKCD on behalf of the IKCC.

 

Please tell us more about the reasons of the International Kidney Cancer Coalition to initiate World Kidney Cancer Day in 2017.

World Kidney Cancer Day is celebrated around the world every year on the third Thursday of June by patients, carers, healthcare professionals and local organisations. World Kidney Cancer Day was established to have a day dedicated to raising awareness of the local and global impact of kidney cancer, educating people about the disease and making a difference in the lives of people with kidney cancer.

Despite the significant effect kidney cancer has on patients and healthcare systems around the globe, in many countries it is a little-known type of cancer with many unanswered questions related to prevention, risk factors, and treatment practices. Greater awareness can help drive the changes that will make a difference in the lives of people currently affected by kidney cancer.

 

World Kidney Cancer Day 2022: We need to talk about treatment options (source: International Kidney Cancer Coalition)

 

This year’s motto of the awareness day is “We need to talk about treatment options”. Why?

The theme was chosen to help create more and better conversations between patients & caregivers and doctors about treatment options. The campaign is grounded in studies, including the IKCC Global Patient Surveys, that show patients and doctors aren’t discussing available treatments. This includes participating in clinical trials, which most patients would seriously consider, but few are ever asked.

However, when people are more engaged in their care and treatment, they experience a better quality of life and an improved quantity of life. Giving patients the time to ask questions and making the effort to inform, educate and consider patients’ values will lead to improved outcomes overall. That’s why we need to talk about treatment options.

 

Which role do clinical trials play in the treatment of kidney cancer patients?

Clinical trials have driven all advances in kidney cancer, and the last 15 years have been transformational. From new therapies to treat metastatic disease to improving surgical and surveillance techniques of localised disease, new ideas are tested, and when proven, move into standard of care.

It is a core belief of IKCC that every patient deserves access to the highest quality care and the opportunity to participate in research through clinical trials. That also means it should be offered as an option for the first, second or third line of therapy.

However, we know from the results in the IKCC Global Patient Survey 2020 that the majority of patients are not being asked to participate in clinical trials, despite their willingness to participate if asked. Specifically, 69% of patients surveyed had never been asked to participate in a clinical trial. Yet, of those, 65% said they would have participated if they had been asked.

 

World Kidney Cancer Day 2022: "How will this treatment make me feel?" (source: International Kidney Cancer Coalition)

 

What is most important for those living with kidney cancer, and what are currently the unmet needs of patients?

That depends on the stage of the kidney cancer. For people living with metastatic or advanced kidney cancer, the major unmet need is that there is still no cure. Only about 10–14% of people on systemic immunotherapy will go on to achieve a long-term response, and we still do not know if the cancer is cured. For the remaining 85–90% of metastatic kidney cancer patients, we need to address ways to better manage the disease so that they are living life to their fullest.

For patients whose kidney cancer is discovered early enough so they can undergo surgery to have their tumour removed, the major unmet need is improving how we detect recurrence of disease. This is significant because about one-third of patients experience a recurrence. Currently, we take expensive imaging scans of the kidneys at random intervals for 5 years, but plenty of patients have a recurrence of their cancer after 5 years. We need an inexpensive way to find recurrence – for example by detecting biomarkers in a blood sample taken at a local clinic – so patients could be screened more frequently and for a longer time after surgery.

For all kidney cancer patients, regardless of stage, treatment options should be provided within the framework of shared decision making including participating in clinical trials. For some countries, where the number of options may be limited, we would like to see robust access to whatever treatment is possible.

 

What are your plans regarding the upcoming awareness day on June 16?

All global activities for World Kidney Cancer Day can be found at the campaign’s website. There you will find the digital campaign in 14 languages that will drive people to a range of resources including “The six questions every kidney cancer patient should feel able to ask their doctor”.

On 16 June, IKCC will host a landmark global webinar, “Talking Treatments”, where clinicians, patients and caregivers will discuss the opportunities and challenges of making every treatment decision a shared decision, and answer questions both posted in advance and asked on the day. Registration for the global webinar is available here.

 

Many thanks for the interview and for your insight!

Cancer Survivors Day: An Interview with Michael Nodes (Cancer Survivor)

Cancer Survivors Day is an annual celebration of those who have survived any type of cancer, a support for those who have been diagnosed and an outreach to families and communities. In essence it is a celebration of life. It is a day for cancer survivors, their families, friends and medical professionals who help treat and go through the treatment process with their patients. It is also an opportunity to highlight the challenges and struggles that those with cancer and those who are in remission go through.

For this important awareness day, which is observed each year on the first Sunday in June, we turned to Michael Nodes, survivor of testicular and prostate cancer as well as father of a Karger Publishers colleague, to hear about his experience of living with and surviving cancer.

 

Do you remember the first thought you had when you were told your diagnosis?

Yes, I thought “oh shit”. I couldn’t really remember anything else, I was in shock really.

 

Has your diagnosis made you look at life differently?

Yes, I think so. I live one day at a time and try not to worry about the future. I used to always worry about the future.

 

Did it take much toll on your mental health?

Yes, at times it did. Profound anxiety and depression. It was definitely on my mind. I went on holiday to Paris with my daughter the year I was diagnosed with prostate cancer and, having thought I was in the clear having had the testicular cancer treated, I couldn’t believe I was back in that mind space again.

 

What surgery/treatment did you have and how did it affect you?

I had surgery in 2017 to remove the testicular cancer, and the recovery process was quite painful. I couldn’t really stand or sit for a fortnight. And then I had one dose of chemotherapy and had to be careful to avoid infection. I’m a teaching assistant and I couldn’t go back to work for three weeks after the surgery and then another three weeks after the chemotherapy. Luckily, I have a very understanding boss and I was able to take time off without worry of no salary due to absence.

I was diagnosed with early prostate cancer in 2018 and I had to go in everyday for a month to have radiation therapy at a hospital forty miles away from my home. That’s one and a half hours’ drive there and an hour and a half back. So, I had to be off work for another month. The main side effect I had was inflammation of the lining of my bowel but luckily nothing more serious. Now every three months I undergo a series of hormone injections in order to make sure the lymph node that is enlarged does no longer contain any cancer cells, and if this should be the case that these don’t spread. The injections made me feel tired and achy, with hot flushes and a definite increase in weight. But it’s all worth it as in 2019 my test results showed that the prostate cancer hadn’t spread, and the testicular cancer had not returned.

 

What would you say to someone currently undergoing treatment?

Listen to your doctors and don’t worry about the future. There’s a lot none of us can know about what will happen. After my testicular cancer diagnosis, all I wanted to do was stay in bed. I didn’t really want to admit to myself what was happening. But I realised I couldn’t be in denial forever because that wouldn’t solve anything. I shouldn’t waste any time wallowing away doing nothing. I needed to enjoy any time I had left and live every day to the fullest. Now I’m back at work part-time so I can spend more quality time with my family, and I volunteer as a Samaritan and mentor new Samaritan volunteers. I’m very lucky to be where I am now and in the state of health and mind I am.

I’d like to take this opportunity to thank all the doctors and nurses who took care of me and supported me through this process, and my colleagues, friends and family who have always been there for me.

 

Many thanks for your participation and insight!

Bladder Cancer Awareness Month 2022: An Interview with Jeannie Rigby (CEO Action Bladder Cancer UK)

Bladder cancer affects all ages and is a very common cancer, e.g., it is one of the ten most common cancers in the UK. Bladder cancer has a high mortality rate and shows a very high recurrence rate.

For Bladder Cancer Awareness Month, which is held each May, we spoke with Jeannie Rigby, Chief Executive of the charity Action Bladder Cancer UK (ABC UK).

 

Please tell us a bit about Action Bladder Cancer UK, i.e., its inception and goals.

ABC UK was set up in 2009 by a group of patients and clinicians as a UK-wide bladder cancer charity. We work to get bladder cancer recognised as a common cancer and the level of acknowledgement, public awareness, new treatments and research investment which it merits – and which those with bladder cancer deserve.

The charity’s board includes both bladder cancer patients and specialist clinicians. Our ABC UK team includes core and project staff and trained volunteers (all bladder cancer patients). We work closely with many bladder cancer specialists within urology, scientific research, cancer nursing and general practice. Our patients provide the insight of direct experience and also actively contribute to cancer advisory panels, research committees, clinical trials, support groups and regional cancer networks.

We deliver our vital work under 4 charitable objectives: to raise awareness of bladder cancer and the related issues; to support patients; to improve outcomes for patients; and to fund and encourage research into bladder cancer.

“We work to get bladder cancer recognised as a common cancer and the level of acknowledgement, public awareness, new treatments and research investment which it merits.”

What can be done about bladder cancer regarding empowering patients and the everyday challenges of living with bladder cancer?

Patients need the right kind of support and information. We take great care to ensure that we provide high-quality information and direct patient support to help patients at the appropriate stage in their treatment journey.

Patients need better support at certain, difficult times. This may be helping patients to make the difficult choices between undergoing Bacillus Calmette-Guerin (BCG) treatment or having their bladder removed or helping patients to deal with the many challenges when adapting to living with a urostomy. For example, we have developed patient support materials working with a group of patients who have undergone a cystectomy (bladder removal), collecting their own experiences and tips on how to live with a urostomy and running online and face-to-face sessions for those who have recently had their bladder removed.

Providing someone to talk to at those difficult points, such as just being diagnosed, making treatment decisions or facing difficulties in adjusting to life after removal of your bladder, can make a big difference. This is why ABC UK works to set up bladder cancer patient support groups, run patient events (both online and face to face), and provide direct patient support – putting people in touch with another patient who has gone through the same experiences.

Also, a very important aspect of empowering those with bladder cancer is by giving patients a voice – bladder cancer is neglected, and there is much work to be done on raising the profile of this common cancer, both with the public but also by lobbying government, medical research bodies and decision makers.

“Patients need the right kind of support and information.”

In your opinion, what are the overlooked needs of patients with bladder cancer?

There are few treatment choices for those with bladder cancer and, in the majority of cases, patients are still faced with the same, limited, treatment options as decades ago.

Bladder cancer is overlooked in terms of research investment, and this shows in these limited treatment options, and also in testing and diagnosis.

Many patients are faced with cystectomy (bladder removal) – which is major surgery with a profound impact on your daily life. New bladder saving treatments are badly needed. Whilst there are some exciting developments in new immunotherapies and targeted therapies for treating bladder cancer – most of these are still at the clinical trial stage.

There is a need for a wider network of support – existing patient support services within hospitals and the wider community provide little for someone with bladder cancer. Many patients come to us for this help, having found no information or answers to their questions elsewhere.

Finally, although this is probably the underlying reason for many of the issues I have mentioned: We need a wider acknowledgement of bladder cancer as a common, and overlooked, cancer – one which has poor patient outcomes and relatively little research investment.

“We need a wider acknowledgement of bladder cancer as a common, and overlooked, cancer.”

Please tell us more about the Patient Decision Aid that you devised. What was the reason for that?

The ABC UK Patient Decision Aid provides information about the most common treatment options available for those patients with high-risk non-muscle-invasive bladder cancer.

As these treatment choices are limited, patients with this type of bladder cancer, faced with the prospect of their tumour perhaps becoming invasive, often have difficult choices to make. The main options are usually treatment directly into the bladder: most commonly immunotherapy with Bacillus Calmette-Guerin (BCG) (or possibly mitomycin C chemotherapy) or cystectomy – surgically removing your bladder, and often other related organs, completely.

This particular decision remains a difficult one and ABC UK are frequently approached by patients or family members, through our direct support service, asking for advice and information at this challenging stage of their treatment.

In response to this need, ABC UK worked with patients and clinicians and produced this unique decision aid in 2019 – updating it this year to reflect varying treatment practice.

It is designed to help patients have a discussion with their clinical team about what’s best for them personally, taking account of overall health as well as their cancer grade and stage. It’s not intended to make those decisions for a patient, but to give the information that will help them think about the effects each option may have on their life, and help them to have these conversations and understand the best way forward for them. It can also help patients talk to partners and family members about a difficult topic. It’s proved to be an extremely valuable resource and is part of our range of ABC UK patient materials in print and online.

“The Patient Decision Aid is designed to help patients have a discussion with their clinical team about what’s best for them personally.”

Why is raising awareness of bladder cancer so important?

Over 20,300 people are diagnosed with bladder cancer in the UK every year. Globally, over 570,000 are diagnosed every year.

It is not a rare cancer – it’s one of the ten most common cancers in the UK, but it does have the profile and level of awareness of a much rarer condition.

We get told again and again by patients that the first they had heard of bladder cancer was when they were diagnosed. Bladder cancer has a profile of poor outcomes and high recurrence levels – and can often be diagnosed late. It can be hard to diagnose and can sometimes be mistaken for something else (particularly in women, where symptoms can be confused with urinary tract infections (UTIs) or other gynaecological conditions).

People need to be aware of the symptoms – to take action and consult their doctor if they see anything different. There can also be a reluctance to talk about any problems with the urinary system, so we need to get the message across that if you see blood in your urine (even just once), are being treated for persistent UTIs or notice anything unusual, you need to get it checked out.

May is Bladder Cancer Awareness Month – and ABC UK is joining with bladder cancer organisations worldwide to raise awareness of the symptoms. The theme is: “Don’t Go Red – Go to a Doctor.” In other words, don’t be embarrassed to talk about it. It may not be bladder cancer, but don’t take that risk – take action.

 

Many thanks for your time and for the interview!

World IBD Day 2022: An Interview with Isabella Haaf (Deputy Director EFCCA / worldibdday.org)

For World IBD Day, which takes place on May 19 each year and unites people in their fight against inflammatory bowel diseases (IBD), i.e. Crohn’s disease and ulcerative colitis, we spoke with Isabella Haaf. She is the Deputy Director of the European Federation of Crohn’s & Ulcerative Colitis Associations (EFCCA), which also coordinates the activities for World IBD Day as well as the website worldibdday.org.

 

World IBD Day was created in 2010 during Digestive Disease Week in the USA. What has changed since its inception regarding its scope and perception?

When we met back then with several other major IBD associations, we decided it was important to mark a special day for Crohn’s and Ulcerative Colitis (collectively known as Inflammatory Bowel Disease (IBD)). There was – and to some extent there still is – little public understanding of the daily struggle that people with IBD face in their lives.

Since its creation World IBD Day has helped us to raise more awareness about the disease and how it impacts on a person’s quality of life. At first, our activities were centered around the geographical areas of the founding members but every year we were approached by associations or representatives from the IBD patient community from other countries who wanted to join our efforts in raising awareness about IBD.

World IBD Day has now become an important global and visible event which brings together patient associations, patient advocates, healthcare professionals, family, friends and other stakeholders to show their solidarity with the 10 million people that are living with IBD worldwide.

 

The slogan given on your website is “Break the Silence”. What made you choose this slogan?

Our theme for last year’s World IBD Day 2021 was “Break the Silence”. With this motto we wanted to start a dialogue and discussions on the psychological impact of the disease:

  • “How does the disease impact on you?”
  • “What are the masks that you are wearing on a daily basis?”
  • “How do you really feel?”

We believe that often people living with IBD do not really tell their story. They might live with pain and think it’s just part of the disease. They might feel bad about their self-image but do not talk about it. They might have good medical scores related to their disease, but their quality of life is not good.

With our “Break the Silence” we highlighted the hidden facts about what it is like to live with IBD. We are currently working on the main issues raised ruing these discussions with the aim to take these to health care providers and other stakeholders and together find solutions that will have a meaningful impact on a person’s quality of life.

 

What is the motto of World IBD Day 2022 and its background, and what have you planned in terms of events, webinars etc. for this year?

This year, EFCCA would like to raise awareness about the impact IBD has on elderly people. Under the motto IBD has no age” we want to put the focus on elderly people (60 plus) and see how living with Crohn’s disease and ulcerative colitis is impacting on their quality of life and care.

World IBD Day 2022: "IBD has no age" (source: EFCCA)

World IBD Day 2022: “IBD has no age” (source: EFCCA)

Why a focus on the elderly?

This group has been consistently underrepresented even though the incidence and prevalence of IBD in older patients is rising. There are estimates that in the next decade, older patients with IBD will represent more than one-third of all patients with IBD. Yet, there is little scientific evidence to understand how IBD impacts on adverse health outcomes or quality of life in older people with IBD.

In the lead up to World IBD Day we would like to organize a campaign putting this underrepresented group under the spotlight. The campaign will consist of various elements including:

  • Social media awareness raising campaign: We will be sharing material highlighting several issues on this topic from impact on quality of life, preference of treatments, participation in clinical trials and various other elements.
  • Purple EFCCA Talk (Webinar) on 19 May – “IBD has no age”: We will also organize a webinar on World IBD Day on the issue of IBD in the elderly and the need for more comprehensive scientific evidence. Our invitees will include representatives from the scientific community to discuss the challenges and unmet needs of elderly patients and to discuss possible collaboration on a joint survey on this topic. Therefore, the webinar will also serve as the launch for the development of a survey with the aim to gather a wider range of information related in general on the impact of IBD on the quality of life and specifically on the age group of people 60 and above.
  • Ressource material: We will compile and make available material on the subject that is already available and that can feed into the preparation of the above-mentioned survey. As usual, all our campaign material will be made available to our members and can be modified if needed to local needs and priorities.

 

Please tell us more about the SECURE-IBD database and its link to COVID-19. What are the outcomes and insights so far?

The SECURE-IBD is an international, pediatric and adult database to which healthcare providers worldwide were strongly encouraged to report cases of confirmed COVID-19 in their IBD patients. The overarching goal was to identify COVID-19 outcomes in IBD patients and evaluate the safety of IBD medications globally in a collaborative, ethical, transparent, and timely manner.

The organizing team included many renowned physicians specializing on IBD and was created as a direct response to the COVID-19 pandemic. EFCCA has strongly supported this initiative.

The SECURE-IBD team has recently announced the close-down of reporting to the SECURE-IBD database. The database has served a valuable purpose at a time when our IBD community needed fast answers to pressing questions.

As we move into a new phase of the pandemic with different variants, evolving vaccines and vaccination strategies, re-infections, and COVID-specific treatments, the most pressing questions have shifted away from “What are the medication and other risk factors for developing a more severe course of COVID-19 in patients with IBD?” to new questions about vaccines, immunity, testing, and treatments.

As SECURE-IBD was designed to address the initial question rather than these current questions, new studies are needed, and thus continued reporting to SECURE-IBD will not be as valuable as earlier in the pandemic.

 

In your opinion, what are the unmet needs of IBD patients regarding patient empowerment, new treatment modalities, and quality of life?

 The main aspects of unmet needs of IBD patients mostly all relate to the patient’s quality of life and the impact the disease has on a person’s work, education, relationships, and/or emotional well-being. This means that even though a patient has achieved a “good” medical score, the additional stress and anxiety that comes along with this chronic disease is often underestimated by the treating medical team and does not translate into an improvement of the patient’s day-to-day quality of life.

EFCCA believes that a multidisciplinary approach that puts the patient at the center represents an opportunity to achieve a more harmonic combination between the quality of care and the quality of life of IBD patients.

Unfortunately, we observe that there is still a lack of timely and effective communication between the patient and the medical team about the emotional and physical burden of IBD. A better mutual understanding of the scope and pervasiveness of the disease burden is essential to improve treatment decisions and patients’ quality of life.

 

Many thanks for your time and for the interview.

Celiac Awareness Month 2022: An Interview with Marilyn G. Geller (CEO Celiac Disease Foundation)

Celiac disease is one of the world’s most prevalent genetic autoimmune diseases. The disease affects between 1 in 100 and 1 in 170 people, whereas the rates vary between different regions of the world. For example, it affects an estimated 3 million Americans, 70–80% of whom are undiagnosed. As celiac disease causes the body to attack its own small intestine, it can lead to many other severe health conditions, including cancer.

For Celiac Disease Awareness Month in May we spoke with Marilyn G. Geller, CEO of the Celiac Disease Foundation, whose focus is trained on three principal areas: medical research, patient and healthcare provider education, and public policy advocacy.

 

Please tell us more about the three principal areas you focus on.

The only approved treatment for celiac disease is lifelong adherence to a gluten-free diet, but for many, the diet is not enough. Up to 50% of celiac patients report disease symptoms despite adherence to the diet – debilitating symptoms that can result in missed work and school. In addition, patients report that the burden of disease management is second only to end-stage renal disease.

We invest in research, advocacy, and education to accelerate the development of treatments and a cure for celiac disease. Our research investments include direct grants to researchers and building state-of-the-art research tools and support, including recruiting patients for clinical trials and studies, that help researchers do their work faster and at a lower cost. Our advocacy work is focused on securing federal funding for celiac disease research from the National Institutes of Health and other federal agencies. Historically, the federal government has ignored or downplayed celiac disease.

Our education initiatives have multiple objectives:

  1. Increase diagnostic rates from current estimates of 30%.
  2. Provide the celiac patient and caregiver community with the latest news and developments, including the opportunity to enroll in clinical trials and studies.
  3. Assure that healthcare providers are aware of research news and updates to diagnostic and disease management guidelines.

 

Please let us know more about the iCureCeliac® Patient Registry and iQualifyCeliac.

iCureCeliac® was created in 2016 as the first public patient registry for celiac disease. Patient registries empower patients and caregivers to share with researchers the impacts of living with celiac disease to shape public policy and advance the development of better treatments and a potential cure. iCureCeliac® is a powerful research database, with more than 7,600 participants providing data for numerous peer-reviewed publications and poster presentations, to help us solve celiac disease.

iQualifyCeliac is the Celiac Disease Foundation’s patient recruitment screening platform. Researchers need patients to participate in studies and clinical trials to advance critically needed therapeutic options through the development pipeline. The Celiac Disease Foundation, through iQualifyCeliac, offers robust patient recruitment services, targeting patient candidates to speed enrollment and improve trial retention to drive discoveries that may lead to better treatments, and ultimately, a cure.

Celiac facts everyone should know (source: Celiac Disease Foundation)

Celiac facts everyone should know (source: Celiac Disease Foundation)

 

The following motto can be found on your website: “Help create a world without celiac disease.” What needs to be done to achieve this goal?

Eliminating celiac disease means finding a cure. Although medical research is difficult to forecast, our experts believe this may be 20 years in the future. The Celiac Disease Foundation is making strategic investments in research and advocacy to bring that day closer. As we move toward this goal, we continue to focus on improving the quality of life for all those affected by celiac disease, which includes supporting research for better diagnostic testing, therapies that mitigate accidental gluten exposure, vaccines that prevent celiac disease either temporarily or permanently, and even funding research into developing wheat varieties with reduced allergenicity.

 

How important is (early) diagnosis, and what can undiagnosed/untreated celiac disease lead to?

The earlier the diagnosis, the quicker the patient can shift to a gluten-free diet and start the process of healing their intestine and thus improving some or all of the 200+ possible symptoms and long-term effects associated with celiac disease, including failure to thrive, gastrointestinal issues, brain fog, depression, infertility, heart disease, and cancer.

 

Which role do digital tools and solutions play for patients and family members nowadays (e.g., The Eat! Gluten-Free app)?

Celiac.org, the most visited celiac disease site in the world, provides up-to-date information on celiac disease with an extensive line-up of educational resources and research-driven tools.

  • The Symptoms Assessment Tool serves as an entry-point diagnostic tool for millions, providing a physician letter to encourage testing for those at risk for celiac disease.
  • The Symptoms Assessment Tool is linked to the Celiac Disease Foundation’s online Healthcare Practitioner Directory, helping patients and caregivers find physicians and dietitians familiar with treating celiac disease in their local area.
  • The Eat! Gluten-Free app is the best place to find the latest celiac disease news, as well as gluten-free products, meal plans, and recipes.
  • Hundreds of thousands of patients and caregivers access our social media pages to build community and stay updated on the latest developments.
  • Our online advocacy training program, found at celiac.org, trains individuals to become Celiac Disease Foundation State Advocacy Ambassadors to help drive policy change and improve the health of those living with celiac disease.
  • The host of digital tools developed by the Celiac Disease Foundation provide necessary information about improving disease diagnosis, advancing biomedical research for treatments and a cure, and supporting those who must follow a gluten-free diet.
Celiac Disease Awareness Month (source: Celiac Disease Foundation)

Celiac Disease Awareness Month (source: Celiac Disease Foundation)

 

 What are your plans for this year’s Celiac Awareness Month in May?

  • Raise It, Give It, Get It: Proud Sponsor King Arthur will be sending baking products and swag for qualifying donations made to the Celiac Disease Foundation between May 1 and May 31.
  • Instagram Giveaways: Proud Sponsors of the Celiac Disease Foundation will support the celiac community through Instagram Giveaways allowing entrants the opportunity to win gluten-free prizes, products, and swag from participating brands.
  • Shine a Light (May 16): May 16 is International Celiac Disease Awareness Day. We are partnering with celiac disease organizations around the world to celebrate the day with the Shine a Light on Celiac campaign by lighting up landmarks across the globe.
  • Celiac Strong Day (May 16): More than 190 schools nationwide will participate in our second annual Celiac Awareness Day. Students are encouraged to wear celiac blue. Each school will receive Celiac Disease Foundation brochures and swag and gluten-free snacks from Proud Sponsors Crunchmaster, Jessica’s Natural Foods, and Snyder’s.

 

Many thanks for your time and for the interview.

Skin Cancer Awareness Month 2022: An Interview with the British Skin Foundation

May is Skin Cancer Awareness Month. Around 1.49 billion people worldwide suffer or have suffered from a skin disease at some point in their lives, which makes it one of the most prevalent medical issues in the world today. Since 1996, the British Skin Foundation has supported and funded 400 research projects, which encompass all skin diseases, from treating eczema to therapies for malignant melanoma. It also aims to educate and inform about early detection and symptoms of skin diseases, reduce stigma, and spread awareness and understanding. Various types of skin cancer are a focus of the British Skin Foundation’s funding and research.

 

If someone has a blemish on their skin – a mole, a lump or something else – that worries them, what course of action would you recommend?

If you are concerned about any changes to a mole or patch of skin, or a new mark on adult skin, it is important to get in touch with your GP. If your GP is concerned, they can refer you to a skin cancer specialist who will be able to give a diagnosis.

 

What are the risk factors for skin cancer?

Skin cancer is the most common form of cancer in the UK and the rates are continuously rising year on year. At least 100,000 new cases are diagnosed each year, and the disease kills over 2,500 people each year in the UK – that’s seven people every day. Some people are more at risk of developing skin cancer than others. Your skin colour or type is the main factor in developing skin cancer, and people who burn easily in the sun are at an increased risk. Other risk factors include getting sunburnt, using sunbeds, having lots of moles and spending a lot of time outdoors with high overall exposure to the sun. The risk of skin cancer is also raised if another family member has had it, and people who have previously had one melanoma are at increased risk of getting another. People with damaged immune systems also have an increased risk.

“Some people are more at risk of developing skin cancer than others.”

What are your recommendations for the prevention of skin cancer?

Ultraviolet (UV) radiation from the sun can cause damage to the skin and lead to skin cancer. UV exposure is actually the main preventable cause of skin cancer. Experiencing sunburn increases the risk of developing skin cancer so it’s very important to protect yourself from the sun. In order to stay safe you should always wear clothing and a hat, covering as much skin as possible. Sunglasses that filter out the UV are also essential to protect from damage to the eyes. Generously apply sunscreen with sun protection factor (SPF) 30 or more to all areas of skin exposed to the sun. No sunscreen provides absolute protection so it should be worn in conjunction with the other lines of defence, and not alone. Keeping cool in the shade is a good way of protecting yourself from the sun. Find shade whenever possible but especially between 11 am and 3 pm when the sun is at its strongest.

“UV exposure is the main preventable cause of skin cancer.”

What impact does skin cancer or any skin disease have on the mental health of patients?

In a recent survey, the British Skin Foundation found that four in five people believe their appearance is important to their general wellbeing and, on top of that, more than half of those with a skin disease feel judged by others. We believe that skin and hair are intrinsic to people’s identity and shouldn’t be underestimated. It is clear from our research that skin and appearance are hugely important factors in mental health and overall happiness. At the British Skin Foundation, we are working to find cures and treatments for all types of skin disease, including skin cancer, and that is why we are always in need of support.

“Skin and hair are intrinsic to people’s identity and shouldn’t be underestimated.”

Are there any apps you would recommend to help check the condition of your skin?

Miiskin is a very helpful mole checking app that helps people keep track of their skin and moles over time. It is important to note that the app does not help you diagnose based on photos but it is a tool to document changes to your skin. The pictures are helpful to track changes in your skin to then prompt you to seek help from your doctor.

 

Many thanks for your time and for the interview.

Oesophageal Cancer Awareness Month 2022: An Interview with the Less Survivable Cancers Taskforce (LSCT)

In 2018, six charities came together and founded the Less Survivable Cancers Taskforce (LSCT). Lung, brain, liver, stomach, pancreatic and oesophageal cancers have the lowest survival rates, and these have not improved for over 40 years. Having noticed that these types of cancer were being underfunded and overlooked, the Action Against Heartburn, the Brain Tumour Charity, the British Liver Trust, Guts UK, Pancreatic Cancer UK and the Roy Castle Lung Cancer Foundation formed a partnership to tackle this problem.

To mark Oesophageal Cancer Awareness Month, we turned to the LSCT to discuss its campaign and the details of this type of cancer.

 

Members of the Less Survivable Cancers Taskforce (Source: Less Survivable Cancers Taskforce)

Members of the Less Survivable Cancers Taskforce (Source: Less Survivable Cancers Taskforce)

 

What are the core objectives of the Less Survivable Cancers Taskforce (LSCT)?

We want to improve outcomes and experiences of all people diagnosed in the UK with a less survivable cancer.

There are some cancers which have seen remarkable progress in survivability but others that are just as deadly as they were 40 years ago. Together, six of these less survivable cancers (lung, brain, liver, stomach, pancreatic and oesophageal) are responsible for half of all deaths from common cancers and make up a quarter of cancer cases.

People diagnosed with these cancers have a shockingly low life expectancy. Today, on average, the chance of someone surviving for five years after being diagnosed with one of these cancers is only 16%. We are campaigning for focused attention and investment to diagnose these cancers earlier and faster, and to ensure everyone receives the best treatment and care available. We also need to see a step-change in research investment so we can find better tools to diagnose these cancers, and better treatments for people once diagnosed.

 

Oesophageal cancer is one of the six types of cancers you focus on. What are the risk factors for oesophageal cancer?

The most prevalent form of this cancer is the adenocarcinoma type where the key risk factor is obesity. This is because the extra weight on the stomach pushes stomach acid up into the oesophagus which, in excessive cases, can cause the cancer. In the squamous cell type of the disease, the key risks are smoking and alcohol (especially together) which likewise adversely affect the oesophagus and can cause cancer. As smoking has declined, so the incidence of squamous cell oesophageal cancer has declined, while that of the adenocarcinoma type has increased with the rising incidence of obesity in modern society.

 

"See your GP if you notice anything unusual for you" (Source: Less Survivable Cancers Taskforce)

“See your GP if you notice anything unusual for you” (Source: Less Survivable Cancers Taskforce)

 

What are symptoms of oesophageal cancer?

 It’s vital that people recognise possible symptoms and see their GP if they are worried. Symptoms can be vague and include difficulty swallowing, persistent indigestion or heartburn, loss of appetite and weight loss, vomiting, pain or discomfort in stomach, chest or back, a persistent cough, hoarseness, tiredness and shortness of breath.

 

Why do significantly more men than women suffer from oesophageal cancer?

 More men than women suffer from oesophageal cancer because men tend to carry excess body weight on their stomachs, while women tend to carry it on their hips. The effect of excess weight on the stomach can push stomach acid into the oesophagus which in excessive cases can cause the cancer.

 

"Close the deadly cancer gap" (Source: Less Survivable Cancers Taskforce)

“Close the deadly cancer gap” (Source: Less Survivable Cancers Taskforce)

 

The LSCT has an aim to double survival rates by 2029. How do you hope to achieve this?

 We are advocating for specific commitments and targets for the less survivable cancers to drive forward the transformational changes we need in diagnosis, treatments and care. We believe that we need tailored strategies which set an ambition to double survival rates for people with a less survivable cancer over the course of the next decade. These strategies could boost survival rates by prioritising:

  • optimal pathways for everyone diagnosed with a less survivable cancer;
  • boosting research investment to achieve breakthroughs in diagnostic tests & treatments; and
  • investing in early detection and faster diagnosis.

 

What else are you hoping to achieve by 2029?

We hope to see action prioritised by governments and health services across the UK in order to improve outcomes and experiences for everyone diagnosed with a less survivable cancer, including clear strategies implemented by health services in England, Scotland, Wales and Northern Ireland.

Find out more on our website and follow us at @LessSurvivable.

 

Many thanks for your time and for the interview.

IBS Awareness Month 2022: An Interview with Alison Reid (CEO The IBS Network)

Irritable Bowel Syndrome (IBS) is a common gastrointestinal disorder, with an estimated prevalence of 10–15%. However, many people remain undiagnosed as well as unaware that their symptoms indicate a medical condition.

In 1997, the International Foundation for Gastrointestinal Disorders (IFFGD) declared April as IBS Awareness Month in order to bring more attention to IBS diagnosis, treatment and quality of life. On the occasion of both IBS Awareness Month and World IBS Day on April 19, we spoke with Alison Reid, CEO of the UK-based charity The IBS Network.

 

Please tell us more about The IBS Network and your work.

The IBS Network is the national charity supporting people living with IBS to learn to better understand and live well with the condition. The charity offers a telephone helpline, a comprehensive self-care programme, and ask the experts online service as well as publications, information and factsheets on the different aspects of IBS. Whether you have recently been diagnosed with IBS, or have had the condition for many years, the charity provides information, advice, and support when you need it and ensures you are not trying to deal with a flare-up alone.

Our advisory team are highly experienced, specialist healthcare professionals and include gastroenterologists, registered specialist dietitians, nurses, pharmacists, and talking therapies experts.

“The IBS Network is the national charity supporting people living with irritable bowel syndrome.”

Who is predominantly affected by IBS, and what can be done to help these patients, especially regarding their quality of life?

More than 12 million people in the UK suffer from IBS. It tends to affect more women than men and affects people of all ages.

Symptoms can include abdominal pain, bloating, increased flatulence, diarrhoea, constipation, mixed diarrhoea/constipation and passing mucus. Other symptoms include lethargy, nausea, backache and bladder symptoms. IBS is a very individual condition and symptoms will vary for each person.

There is no cure for IBS and no one treatment that works for everyone. The key to living well with IBS is self-management. Once you have a better understanding of what is happening in your body you will be able to explore what treatments work best for you.

Treatments include dietary and lifestyle changes; psychological therapies (talking therapies); and medications (see your GP or pharmacist for advice). These may be used together or on their own depending on the possible cause and severity of your IBS.

“The key to living well with irritable bowel syndrome is self-management.”

On your website, there is mention of the IBS Self-Care Programme. What can you tell us about this initiative?

As I mentioned, self-care is key to living well with IBS. This is why we created the IBS Self-Care Programme, which provides comprehensive information about the nature, causes, and management of IBS. Members can work through the programme at their own pace, finding out what works and doesn’t work for them. At the end of the programme, they will have created their own self-care programme.

We have to be honest with you; it’s not easy. Unfortunately, there are no quick “fixes” for IBS. It’s a debilitating condition that’s different for everyone. There is no one treatment that works for everyone. That’s why we designed the self-care programme. We wanted to give everyone the information and tools to understand their IBS and find what works for them. Being part of our community can really help; we are here for members when they need that extra support. They can ask a question to one of our medical experts and can be confident they are getting the best advice.

Through the programme, members can better understand their symptoms and how to manage them. They’ll learn what medications help, how to adjust their diet and how to better manage stress and emotions. They’ll design their own personal self-care programme and use our symptom tracker to track how their symptoms respond to change. For those who don’t want to complete an online programme the charity also offers a paper diary alternative which is available in its shop or by calling the office.

“There is no one treatment that works for everyone. That’s why we designed the self-care programme.”

Please let us know more about your IBS Support Group. What does it offer to those affected?

Pre-pandemic we did have 16 support groups around the country. Along with everything else these closed in early 2020. Since then we have been looking at ways we can offer this service online at a local level. After groups have been established online we hope to gradually reintroduce localised group meetings; but this might take some time.

 

April is IBS Awareness Month: What is The IBS Network planning in terms of events, workshops, webinars etc. in order to raise more awareness?

April’s IBS Awareness Month is a time when we step up our efforts to raise awareness of IBS and how to live well with the condition.

This year, we are launching a new campaign, encouraging members of our community to celebrate all the things they can still do and all the things they can try, which will improve their mental and physical health.

We hear from people every day who start by saying, “I can’t …”. They can’t go out, eat out, go to work, see friends, or enjoy their hobbies because of their IBS.

We are encouraging our community to try and think differently, exploring what they can still achieve. We’re keen to see what effect this has on mind set and managing their IBS.

Taking action, making a change, or changing an attitude or belief are all great ways to improve mental health and keep depression, stress, anxiety and frustration at bay, which, in turn, can help ease IBS symptoms. We know it’s not easy or straightforward, but with the right support, we believe that it is possible.

We are holding two webinars: one about stress, anxiety and IBS (Monday 4 April, 11 am to noon) and the other about diet, “What can I eat?” webinar (Wednesday 20 April, noon to 1 pm).

We’re also planning a cook-along with the chef from Field Doctor. Throughout the month, we’ll be sharing advice, information, interviews, competitions and more.

“IBS Awareness Month is a time when we step up our efforts to raise awareness of IBS and how to live well with the condition.”

How has the COVID-19 pandemic affected both the lives of IBS patients as well as the work of your organization?

The global pandemic has been difficult for everyone. Enquiries from people living with IBS greatly increased as the full force of the stress and anxiety they felt started to impact on their condition. The core team at the charity worked long hours to ensure that every phone call and every email asking for help was answered. We want everyone living with IBS to understand that they are not alone.

I’m very proud of how The IBS Network team responded to make sure our community felt supported during that time. We quickly adapted to new ways of working, increased our communications to members, and made sure we were there for everyone who needed us. As we have emerged from the pandemic, the challenging and uncertain times continue, and we are more determined than ever to be here to continue to support our members into the future.

 

Many thanks for the interview!

Testicular Cancer Awareness Month: An Interview with Steven Crocker (Testicular Cancer Awareness Foundation)

For Testicular Cancer Awareness Month in April we spoke with Steven Crocker. He is a stage 2b testicular cancer survivor, board member of the Testicular Cancer Awareness Foundation based in Colorado, USA, and host of the podcast “It Takes Balls”.

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

One particularly important aspect regarding testicular cancer is the role of testicular self-examination and early detection:

Testicular self-examination

Colorectal Cancer Awareness Month 2022: An Interview with Dr Angela Nunnery and Dr Millard D Collins

Dr Angela Nunnery and Dr Millard D Collins are family medicine doctors who know about the importance of colorectal cancer screening. They are passionate about prevention and advocate for early detection of cancerous tissue. Both recommend regular screening for colorectal cancer in order to make sure that any colon polyp will be detected and removed ideally before it can develop into cancer.

They are co-authors of the soon-to-be-published “Colorectal Cancer Screening Modalities”, a resource for health care professionals. It illustrates the current recommendations on screening for colorectal cancer and gives a profound overview of the screening modalities that are available as well as in development in the USA. For this interview for Colorectal Cancer Awareness Month, which is held in March, we wanted to know more about the different screening methods from the patients’ perspective.

 

Dr. Nunnery, Dr. Collins, there are basically three types of tests to detect and diagnose colorectal cancer: visualization tests, stool-based tests, and blood assay tests. What are the pros and cons of each type of test?

 There are three types of tests, as stated:

  • Visualization tests include colonoscopy, flexible sigmoidoscopy, and CT (computed tomography) colonoscopy. Visualization tests can show the various landmarks of the colonic areas explored and provide information as to the size, shape, and composition of masses seen. Colonoscopy and flexible sigmoidoscopy can both also take biopsies of lesions seen, and often better characterize the lesion prior to biopsy results. These modalities also eliminate the need for follow-up testing that occurs with other modalities if there are findings on screening. Those other modalities require colonoscopy if screenings are positive. This includes CT colonoscopy, which can visualize, but cannot attain biopsy samples. Cons associated with visualization testing include the need for bowel preparation, variations based on the skill of the specialist performing the exam, and risk of perforation.
  • Stool-based tests include gFOBT (guaiac-based fecal occult blood test) and FIT (fecal immunochemical test). These tests are done to screen blood present in samples of stools to be provided. Advantages of these tests include being cheaper, widely available, and non-invasive. Disadvantages include the handling of stool (to create the sample and to process it), inability to differentiate non-colonic causes of bleeding or altered samples based on medications or food, and the requirement for visualization follow-up on positive screenings (i.e. colonoscopy).
  • Blood assay tests are new and promising technologies that are emerging, such as MT-sDNA (multitarget stool DNA). The pros would include its reported abilities to capture evidence of lesions of all types, including precancerous polyps to cancerous lesions at various stages. Also, this testing would be non-invasive. Cons would include expense at this point, high false positives, and the need for visualization follow-up on positive screenings (i.e. colonoscopy)

 

How do healthcare professionals decide which method to use for each individual patient?

Healthcare providers consider several factors when deciding which method to use for each individual: costs, convenience, and the patient’s medical history and possible medication interactions. Ultimately, all viable options should be discussed with the patient while discussing the pros and cons of each. Patient preference is the option most commonly chosen.

There may be some in-depth discussion when considering the risks factors present, previous tests and associated findings, and the potential for follow-up. In select cases, the option for colonoscopy may be selected when the likelihood of biopsy is extremely high due to reasons stated above.

  

Invasive screening methods are considered more effective than non-invasive screening methods. Why are non-invasive methods still being used?

Non-invasive methods are still being used for several reasons when it comes to screening for colorectal cancer. Cheaper costs associated with these test options are big ones. It is critical to eliminate the need for anesthesia and a facility charge associated with invasive screening options. The convenience of being able to do the test in the comfort of one’s own home makes it attractive for many. Some patients have considerations that may make anesthesia or mobility a challenge, including medical conditions, medications, and other things (morbid obesity, quadriplegia, stroke deficits, anatomic colonic variants). Furthermore, non-invasive methods are still highly effective for detecting colorectal cancer at various stages, thus impacting mortality rates. Their main drawback is the need for colonoscopy in the event of a positive screening.

 

What are the key barriers identified that can prevent a person from going for a colorectal cancer screening? How can these barriers be overcome?

Some of the key barriers preventing a person from going for colorectal screening include costs, fear of the procedure or results, past experiences that were unsatisfactory in the healthcare setting, not being made aware of the recommended testing method or interval by their provider, not having a routine provider, and lack of insight due to a medical condition (i.e. mental issue or substance abuse).

These barriers can be overcome through constant engaging of both patients as well as providers on the up-to-date guidelines, recommendations and characteristics of each, and removal of any stigma associated with receiving these services. There should also be funding available for screening of cancers that can be detected early to improve access and decrease morbidity and mortality associated with development of colorectal cancer.

 

New methods of screening are being developed and tested, such as detecting circulating tumor cells in the blood stream. What makes you think that these new methods will eventually become the norm for colorectal cancer screening and methods like colonoscopies will be a thing of the past?

While there is agreement that new blood testing modalities show promise in the early detection of colorectal cancers in selected patients, the data is too preliminary to reach this conclusion. Similarly, while they can pick up evidence of the presence of tumors, the premise is that cells have been released into the blood stream and no information is provided as to where in the colon such lesions are located. As such, colonoscopies would still be needed to follow up any positive screens. This visualization technique is likely here to stay.

 

Many thanks for your time and for the interview.

Multiple Myeloma Awareness Month 2022: An Interview with Lisa Ferguson (Myeloma Specialist Nurse)

On the occasion of Multiple Myeloma Awareness Month in March we spoke with Lisa Ferguson. She works as a Myeloma Specialist Nurse for the Oxford University Hospitals NHS Foundation Trust in the UK.

 

What is multiple myeloma?

Multiple myeloma, also referred to as MM or myeloma, is a type of blood cancer which arises from plasma cells in the bone marrow. It accounts for 15% of all blood cancers but only 2% of all cancers which is why a lot of people have never heard of it. It is more common in people over the age of 65 but can be diagnosed in people younger than this.

Plasma cells are involved in the immune system. They produce antibodies which help fight infection. In myeloma, the abnormal plasma cells in the bone marrow produce a large amount of a single type of antibody, known as paraprotein, which has no useful function. In most cases, paraprotein moves out of the bone marrow and into the blood; and it is often through the measurement of this paraprotein that myeloma is diagnosed and monitored.

Treatment is aimed at controlling the disease, relieving the complications and symptoms it causes, and extending and improving the quality of life. Myeloma is not currently curable but in most cases is very treatable, with a lot of effective treatments available. This means that even after successful treatment has provided a period of remission or stable disease, the myeloma will return (known as relapse). Myeloma is a very individual cancer in terms of how people experience complications, as well as how they respond to treatments, which can vary greatly.

For further information about myeloma including common symptoms and how it is diagnosed please click here.

“Multiple myeloma is a type of blood cancer which arises from plasma cells in the bone marrow.”

What are the tasks of a Myeloma Clinical Nurse Specialist (CNS) and how does this differ from the role of an Advanced Nurse Practitioner (ANP)?

The tasks of a CNS are to:

  • Provide physical & emotional support and advice regarding health concerns, and practical issues.
  • Be the patients advocate.
  • Promote health & wellbeing by providing education and information.
  • Symptom control & management which can in turn reduce admissions.
  • Co-ordinate care and be a liaison between different departments and teams involved in patient care; which in turn provides the patient with holistic care.
  • Be a resource and support for patients and their carers/families.
  • Service development.

The tasks of an ANP and CNS are fairly similar although an ANP has to have a Master in Nursing Practice and will be a non-medical prescriber who can physically assess and independently diagnose patients; however, you can become a non-medical prescriber without being an ANP. They will often run their own nurse-led clinics. That is not to say that nurse-led clinics cannot be set up and ran by a CNS.

 

What were the major breakthroughs in the treatment of multiple myeloma? What new treatments can be expected in the near future?

The introduction of myeloma-specific treatments such as bortezomib (a proteasome inhibitor) and thalidomide (an immunomodulatory imide drug (IMiD)) were important developments in the treatment of myeloma, as well as the later generations of thalidomide (lenalidomide & pomalidomide). More recently there has been the development of new proteasome inhibitors (PI) such as carfilzomib and ixazomib; and monoclonal antibodies daratumumab, isatuximab and belantamab.

We are also now using quadruplet induction therapy (4 medications) and the use of maintenance therapy post autologous stem cell transplant which is helping to increase length of remission.

Treatments that will be coming in the future include: potential wider use of CAR-T cell therapy, next generation medications of existing medications utilised within myeloma such as iberdomide (IMiD), and clinical trials that will be using bispecific antibodies.

“Proteasome inhibitors (PIs) and immunomodulatory imide drugs (IMiDs) were important developments in the treatment of myeloma.”

You work with patient organisations, support groups, and charities, such as Myeloma UK or the International Myeloma Foundation (IMF). How do patients profit from this cooperation?

The benefits for patients that come from the cooperation are consistency of information being given to them. Knowing that they are being kept informed about upcoming treatments and/or trials that are relevant to the UK.

Being involved in the support group means that any medical questions can be addressed appropriately. It also helps to build a good relationship between the CNS and the patients, and their carers/relatives. The support group is a more relaxed and informal setting and there are times that queries are raised that might not otherwise be spoken about in a clinic environment.

“The benefits for patients are consistency of information being given to them and being kept informed about upcoming treatments and/or trials.”

What are your plans for Multiple Myeloma Awareness/Action Month in March? What will you do to raise awareness of this condition?

With the ongoing pandemic it is hard to organise a stand within the hospital which would be the normal approach. However, we will still be able to display information about myeloma in prominent areas of the hospital; as well as having information that can be taken away.

 

How has the ongoing COVID-19 pandemic impacted your work as a Myeloma CNS as well as the quality of life of multiple myeloma patients?

Generally, the CNS tasks and role have not changed although we are working more remotely; this is due to limiting the amount of face-to-face clinic appointments. We do still make sure that new patients are seen, and time is spent with them in person to go through the diagnosis and treatments, as well as seeing any patients that need CNS input. In some ways the need to be an advocate for patients has increased, as has the importance of communication within the team.

Patients have felt quite isolated due to the pandemic and for some the fact that clinics have moved to phone clinics where possible has increased this. There has also been an increase in anxiety especially when there have been relaxations in the guidance regarding shielding, face masks etc. There have been some changes to treatment with a focus more on using oral treatments, if appropriate, to reduce visits to the hospital; but this in turn means that they then miss the contact with the medical team that they would have had through DTU (Day Treatment Unit) visits, thus enforcing the potential feelings of isolation.

“Patients have felt quite isolated due to the pandemic and for some the fact that clinics have moved to phone clinics where possible has increased this.”

Many thanks for the interview!

World Kidney Day 2022: An Interview with Alice Poidevin (worldkidneyday.org)

World Kidney Day (WKD) is a worldwide campaign in order to raise awareness of the importance of the kidneys and their function. The awareness event, which in 2022 takes place on March 10, focuses on preventive behaviors, awareness about risk factors as well as awareness about how to deal and live with a kidney disease.

World Kidney Day is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). We spoke with Alice Poidevin, Campaign and Projects Officer at worldkidneyday.org.

 

The motto of World Kidney Day 2022 is “Kidney Health for All – Bridge the Knowledge Gap to Better Kidney Care”. What exactly is this knowledge gap and what can be done to bridge it?

A persistent and ongoing chronic kidney disease (CKD) knowledge gap exists, one that is demonstrable at all levels of healthcare:

  • The community: Obstacles to better kidney health understanding include the complex nature of kidney disease information, low baseline awareness, limited health literacy, limited availability of CKD information, and lack of readiness to learn.
  • The healthcare worker: Another barrier to overcome in order to ensure greater awareness is a more focused education of physicians, as they are in charge of the patients’ medical condition.
  • Patients: Another challenge is the lack of patient participation, engagement, and education regarding their own health measures and care, which reflects the health literacy deficit seen among patients.
  • The public health policy makers: Finally, CKD is a global, public health threat but is typically low on government health agendas with political commitments on non-communicable disease programs concentrating predominantly on five main diseases – heart disease, stroke, cancer, chronic respiratory diseases and diabetes.

This knowledge gap is stifling the fight against kidney disease, and increasing the inherent associated mortality.

In 2022, the WKD Joint Steering Committee calls for everyone worldwide to not only be aware of the disease, but to actively know what their own kidney health measures are. For example, what their blood pressure is and what the treatment objectives are. It is a cause that involves all of us in the kidney community worldwide — physicians, scientists, nurses and other health care providers, patients, administrators, health policy experts, government officials, nephrology organizations, and foundations. All need to be aware of the ways in which more attention to the kidney in the setting of government policies can lead to major benefits for both patients and health care budgets.

For more information on the 2022 World Kidney Day theme, read more here.

 

World Kidney Day - March 10, 2022 (source: worldkidneyday.org)

 

Why are kidney diseases labelled as “silent killers”? Who is most at risk of a kidney disease?

Generally, kidney disease starts slowly and silently, and progresses over several years. A person can lose up to 90% of their kidney functions before experiencing any symptoms. Signs of advancing CKD include swollen ankles, fatigue, difficulty concentrating, decreased appetite, blood in the urine and foamy urine.

We are not all equal with regard to kidney disease and access to treatment. Kidney disease is common, about 1 in 10 people have some degree of CKD.

Some communities in both higher and lower income countries are at greater risk than others because of their ethnic origin, socioeconomic status and/or where they live. This has major public health implications because of the terrible impact of kidney failure and the extremely high cost of renal replacement therapy. African, American Indian, Hispanic, Asian and Aboriginal populations are known to suffer from higher rates of diabetes and high blood pressure, which are leading causes of CKD. These populations are therefore at higher risk of developing severe kidney disease and ultimately kidney failure.

 

What can be done to prevent and/or detect kidney diseases as early as possible?

 The majority of individuals with early stages of CKD go undiagnosed. On World Kidney Day, we are calling on everyone to check if they are at risk for kidney disease and encourage those with any risk factors to take a simple kidney function test.

The early detection of failing kidney function is crucial because it allows suitable treatment before kidney damage or deterioration manifests itself through other complications.

Kidney diseases are silent killers, which can greatly affect your quality of life. There are, however, several easy ways to reduce the risk of developing kidney disease. Following the 8 Golden Rules may help you prevent kidney disease.

 

World Kidney Day - March 10, 2022 (source: worldkidneyday.org)

World Kidney Day – March 10, 2022 (source: worldkidneyday.org)

 

Which treatment options are the most effective against kidney diseases and kidney failure?

There is no cure for CKD, although treatment can slow or halt the progression of the disease and can prevent other serious conditions developing.

The main treatments are a proper diet and medications, and for those who reach end-stage kidney disease (ESKD), long-term dialysis treatment or kidney transplantation. In the early stages of kidney disease, a proper diet and medications may help to maintain the critical balance in the body that your kidneys would normally control. However, when you have kidney failure, wastes and fluids accumulate in your body and you need dialysis treatments to remove these wastes and excess fluid from your blood. Dialysis can be done either by machine (hemodialysis) or by using fluid in your abdomen (peritoneal dialysis). In suitable patients a kidney transplant combined with medications and a healthy diet can restore normal kidney function. Dialysis and kidney transplantation are known as renal replacement therapies (RRT) because they attempt to “replace” the normal functioning of the kidneys.

Find out more about RRT here.

 

World Kidney Day is a joint initiative of the International Society of Nephrology (ISN) and the International Federation of Kidney Foundations (IFKF). What are your plans for this year’s awareness day?

To mark World Kidney Day 2022, we are encouraging people across the globe to conduct their own awareness raising activities either online or in-person, depending on their local public health guidance.

We recommend people to also use social media to spread the word about their activity and mention #WorldKidneyDay or tag @worldkidneyday in their post to follow the progress of the campaign and for us, to share their WKD content with a wider audience. We encourage people to also participate in the #ShowYourKidneys campaign to remind everyone of the primary function of their kidneys and their location in their bodies. On 10 March 2022, the WKD team will share photos and social media posts to drive one’s activity and engagement on social media.

Resources and materials, such as the social media toolkit, the activities guide and WKD 2022 visuals, can be found on the World Kidney Day website. Those will help organizers to find inspiration for their social media campaign or activity to raise awareness about kidney disease!

 

Many thanks for your time and for the interview.

Rare Disease Day 2022: An Interview with Jo Balfour (Managing Director Cambridge Rare Disease Network)

For Rare Disease Awareness Month in February and Rare Disease Day on February 28 we spoke with Jo Balfour, founding member and Managing Director of the UK-based charity Cambridge Rare Disease Network (CRDN), about the Action for Rare Disease Empowerment (ARDEnt) project.

The ARDEnt group’s goal was to focus on the unseen impact of the COVID-19 pandemic on people living with rare conditions, to protect the existing services for people living with rare conditions and to find out which lessons can be learned.

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.

Rare Disease Day 2022: An Interview with Anna Kole (EURORDIS)

On the occasion of both Rare Disease Awareness Month in February and Rare Disease Day on February 28 we spoke with Anna Kole, Public Health Policy Director at EURORDIS – Rare Diseases Europe, which is the voice of rare disease patients in Europe. She is a public health professional with more than a decade of experience in the field of rare diseases, both in the US and Europe.

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.

Rare Disease Day 2022: An Interview with Helena Baker (CEO Rare Disease Nurse Network)

On the occasion of Rare Disease Awareness Month in February as well as Rare Disease Day on February 28 we spoke with Helena Baker, CEO and co-founder of the Rare Disease Nurse Network (RDNN). Furthermore, she is a nurse, Clinical Consultant to The MRN (Medical Research Network), and a rare disease patient.

The members of RDNN are rare disease nurses, genetic counsellors, parents to children with rare disease, people that have rare diseases themselves or people who are passionate about making a positive difference.

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.

Alexander Eitner

With a background in English Studies and Scandinavian Studies as well as time spent abroad working in Norway and Scotland, Alexander Eitner has been working at Karger Publishers since 2008. As a publication manager, he was in charge of publication planning, editorial office, and copyediting for the scientific journals VISCERAL MEDICINE and BREAST CARE, among work for other Karger journals and book publications. In 2019, Alexander joined the unit Healthcare Markets (HCM) as a Healthcare Publications Editor, focusing on reliable and easy-to-understand information for both patients and the general public. In his free time he enjoys spending time with his family, travelling/camping, reading as many books as possible, and music (sadly he doesn’t find the time any more to practice his sets of Scottish Great Highland bagpipes and Scottish smallpipes).

Dry January 2022: An Interview with Dr Richard de Visser

On the occasion of Dry January 2022, we turned to Dr Richard de Visser from the University of Sussex. An expert in health psychology, Dr de Visser has been working in his field for 25 years. During that time, he has received many awards for his teaching and co-authored and co-edited textbooks and over 130 papers. He has also conducted surveys on the effect Dry January has on those taking part.

 

From your experience, what motivates people to do Dry January?

People have a range of motives, and they often have multiple motives. Some want to have a break from alcohol after the December festive season. Some want to save money. Some want to see if they can experience the benefits to wellbeing that have been found in our past research, and are promoted on the Dry January website: sleeping better, having more energy, and being better able to concentrate. Some simply want to take on the challenge – individually, or with other people. Many people also want to re-set their relationship with alcohol for the longer term, and that is a key goal for Alcohol Change UK, the charity that runs Dry January.

“Many people want to re-set their relationship with alcohol for the longer term.”

Why do you think people continue with Dry January even after the event has finished?

A lot of people are surprised by the benefits they experience within a relatively short timeframe. We have found that the majority of participants report better sleep, better concentration, and having more energy. Around half report losing some weight, and most also report saving money. People who have never taken a break from alcohol become aware of these benefits for themselves, and this seems to be a key influence on subsequent behaviour.

Importantly, taking part also helps people to develop the skills required to resist temptations, expectations, or pressure to drink, and this means that they feel more in control of their drinking.

Most people do return to drinking at around the same levels as prior to Dry January, but they feel more in control of what they are doing. Around 10% report drinking more: This is most likely among heavier drinkers who do not make it through the month, and it supports the message from Alcohol Change UK that such people may be best advised to try other ways to reduce their alcohol intake. Around 40% of participants are drinking markedly less 6 months after Dry January: They report drinking on fewer days per week, and drinking less on the days when they do drink.

To use some psychological terminology, Dry January provides an opportunity (and support) for people to conduct “behavioural experiments”. So, people can try having dinner without a glass of wine, and having direct personal experience of the results of that choice: They learn that they can still socialize without alcohol. Or, they may try one of the recipes on the Dry January website, and learn that there are non-alcoholic drinks that they can enjoy.

“A lot of people are surprised by the benefits they experience within a relatively short timeframe.”

What are the long-term positive effects of doing Dry January?

As noted above, we have found that 6 months on, 40% of participants are drinking significantly less than they did before undertaking Dry January. In one of our studies, they were drinking one day less per week, and on the days when they did drink, they were drinking less.

On top of this, people feel more in control of their drinking, and feel better able to pass up an offer of a drink, or resist drinking to manage unpleasant emotions. Our more recent studies have shown that these changes are not observed in drinkers who are not undertaking Dry January.

If sustained over time, these changes would reduce the risk of liver disease and a range of cancers.

As noted earlier, we have also found that the vast majority of participants report better wellbeing in terms of sleep quality, energy levels, and concentration.

“People feel more in control of their drinking.”

Why has Dry January become popular among light drinkers?

Dry January is popular across the spectrum of drinkers, and participants actually tend to be slightly heavier drinkers than the rest of the population. Whatever people’s initial patterns of drinking, Dry January gives them a socially acceptable reason for not drinking for a predetermined time. This is important in countries like the UK, where alcohol use is an expected part of so many social interactions.

Another reason for the popularity of Dry January is that it provides a range of useful sources of support and encouragement via the website, Facebook groups, the Try Dry mobile app, and email messages. Over the years, the types and content of the support has been expanded and tailored so that it better meets the needs of the increasing range and numbers of people who take part. Importantly, our research has shown that the more use people make of this support, the more likely it is that they will complete the challenge. So to sum up, Dry January provided a lot of support to try something that would be more difficult to do as a solo effort.

“Dry January provides a range of useful sources of support and encouragement.”

More and more people are giving up drinking altogether. What do you think is the main appeal of sobriety?

People have a range of motives for giving up, and for many people, these motives are strengthened because Dry January gives them relatively rapid personal experience of the benefits of drinking less.

It is also important to note that there are still a lot of people who drink excessively. It may be the case that many of the current non-drinkers are former lighter drinkers who may have consumed alcohol because of social expectations, but now feel that it is possible and perhaps easier for them not to drink. Campaigns like Dry January make not drinking less unusual, and more easy for people to think about trying.

We have also found that for some people, giving up drinking lets them get rid of the feeling that they need to drink to have fun, and it lets them develop what feels like a more authentic sense of self.

 

Many thanks for your time and for the interview.

Psoriasis Awareness Week 2021: An Interview with Dominic Urmston (The Psoriasis Association)

On the occasion of Psoriasis Awareness Week 2021, which ran from October 29 to November 4, we spoke with Dominic Urmston, Patient Advocacy and Communications Manager of UK-based charity The Psoriasis Association. Below please find insights into the work of the charity, novel treatments options for psoriasis as well as the organisation’s schedule for the awareness event.

 

Please tell us more about The Psoriasis Association and the work of the charity.

The Psoriasis Association is the leading national charity and membership organisation for people affected by psoriasis in the UK. We have three main objectives: to provide information, advice and support to those whose lives are affected by psoriasis; to raise awareness of psoriasis; and to promote and fund research into the causes, nature and care of psoriasis.

 

In accordance with these three main objectives, what is The Psoriasis Association currently doing to: i) support people with psoriasis; ii) raise awareness of psoriasis; iii) research psoriasis?

We provide easy access to accurate, up-to-date and evidence-based information about psoriasis, psoriatic arthritis and treatments. This is offered through our website, and social media channels: Facebook, Twitter, Instagram, LinkedIn and YouTube. We also maintain a dedicated helpline service by phone, email and WhatsApp and provide leaflets and information sheets to people with psoriasis and healthcare professionals free of charge. The forums on our website and our Facebook Group are safe spaces where people with psoriasis can share their experiences and find peer-to-peer support.

Our annual Psoriasis Awareness Week begins on 29th October (World Psoriasis Day), and we also raise awareness of psoriasis at events, meetings and exhibitions attended by our members, the general public, healthcare professionals and politicians. We provide leaflets and posters to hospitals, clinics and surgeries, and regularly speak at conferences to healthcare professionals on issues that really matter to patients. We support and sit on a number of parliamentary groups in order to ensure that the voices of people with psoriasis are heard in the English and Scottish Parliaments, and the National Assembly for Wales.

Through our annual research programme we award grants to high-quality projects. We also collaborate with various research studies and consortia to ensure that the voices of people with psoriasis and psoriatic arthritis are heard. We use our communities to help researchers both recruit participants to their studies and communicate their findings.

Source: The Psoriasis Association

What is the difference between psoriasis and psoriatic arthritis, and who is primarily affected?

Psoriasis is an immune condition which causes symptoms on the skin. The skin replacement process speeds up, taking just a few days to replace cells that usually take 21–28 days. This accumulation of skin cells builds up to form raised “plaques” on the skin, which can be flaky, scaly, itchy, and red on Caucasian skin or dark on darker skin tones. Psoriasis can occur on any area of the body.

Psoriatic arthritis is an inflammatory arthritis which affects around 1 in 5 people with psoriasis. It affects the joints (such as the knees or those in the hands and feet), as well as areas where tendons join to bone (such as the heel and lower back), causing tenderness, swelling and stiffness.

Most people who have psoriatic arthritis find it occurs after developing psoriasis, but some do develop the arthritis before they notice any psoriasis on their skin. Men and women are equally likely to develop psoriatic arthritis and, although it can occur at any age, it is most common in the first decade after being diagnosed with psoriasis. Psoriatic arthritis is not always linked to how severe a person’s psoriasis is. People with mild or moderate psoriasis can also develop psoriatic arthritis.

 

Which novel treatment options for psoriasis are on the horizon?

Since 2006 there have been great treatment advances for people with severe psoriasis or active psoriatic arthritis in the form of “biologics”. Biologics are mostly given by injection and are specifically designed to mimic chemicals that are naturally found within the human body. These biologic medications block or neutralise the activity of certain chemical “messengers” in the immune system which signal other cells to cause inflammation. By blocking this activity, these biologics are blocking the very mechanisms that lead to the over-production of skin cells and symptoms of psoriasis or the damage to bones and tendons in psoriatic arthritis.

A new treatment class for psoriatic arthritis, Janus kinase (JAK) inhibitors, has also been approved for use, with research ongoing in psoriasis. JAK inhibitors are mostly taken orally as tablets and work by blocking the messaging pathway, calming down the immune system and easing the symptoms.

With these exciting advances, research is now underway to make it possible to predict which biologic will work best for different individuals, thereby improving on the current “trial and error” approach to finding an effective treatment.

Source: The Psoriasis Association

Psoteen is your sister website for teenagers and young people with psoriasis. To which extent is psoriasis different in this group?

Guttate psoriasis is particularly common in teenagers and young adults. This presents as a widespread rash of small spots that appear mainly across the torso, back, limbs and sometimes neck, head and scalp. Guttate psoriasis often begins after a throat infection and usually clears after several weeks or months.

The most common form of psoriasis, plaque psoriasis, has two distinct points of onset, often between the ages of 16–22 years and 55–60 years. It is vital that young people have relevant information and support at a time when they are often experiencing a number of changes and challenges alongside psoriasis (for instance exams, relationships, and moving out of home).

Psoriasis of any kind impacts day-to-day life. The visible nature of psoriasis can be particularly tough to deal with and can lead to feelings of shame and embarrassment, low self-esteem and social isolation.

 

Psoriasis Awareness Week 2021 ran from Friday 29th October to Thursday 4th November, with a theme focusing on lifestyle factors. What were your plans for this year’s awareness week?

This Psoriasis Awareness Week we held two Facebook Live sessions with experts in nutrition and exercise. The first examined the evidence for nutrition in psoriasis. The second focused on the benefits of exercise for psoriasis and psoriatic arthritis.

We also collaborated with St John’s Derm Academy in London to hold an online webinar. This event included updates on two major psoriasis research projects – The PsoProtectMe psoriasis and COVID-19 registry and the Biomarkers and Stratification To Optimise outcomes in Psoriasis (BSTOP) study which aims to identify biomarkers that will enable doctors to give the right psoriasis medicine to the right patient at the right time.

Finally, Psoriasis Awareness Week also sees the launch of our fundraising challenge – the #PsoActive29. Its aim is for participants to raise vital funds and awareness whilst improving their own health and wellbeing by taking on an active challenge.

More information about Psoriasis Awareness Week and the #PsoActive29 can be found on our website.

 

Many thanks for your time and for the interview.

Lupus Awareness Month 2021: An Interview with Mandy McCartney (Specialist Lupus Nurse)

Lupus Awareness Month takes place during October in the UK every year. We spoke with Mandy McCartney, a Specialist Lupus Nurse based in Leicester, about the autoimmune disorder, modes of treatment, and her tasks as a Specialist Lupus Nurse.

 

What is lupus and what are its triggers?

Lupus is a disease that occurs when your body’s immune system attacks your own healthy tissues and organs (autoimmune disease). Lupus can cause inflammation that can affect any of the body’s systems including joints, kidneys, skin, heart and lungs. Lupus can affect just the skin, and this is called discoid lupus erythematosus and subacute cutaneous lupus erythematosus. And it can also effect just the kidneys, and this is called lupus nephritis.

There are studies to suggest that lupus is a hereditary condition; however, there are other triggers such as certain medications, infections and photosensitivity (sunlight).

There are other risk factors such as:

  • Age (lupus can affect all ages but most are diagnosed between the ages of 15–50),
  • Sex (lupus is more common in women).
  • Race (Asians, African-American and Hispanics are more likely to be affected).
Most common symptoms of systemic lupus erythematosus (source: Mikael Häggström, used with permission)

Most common symptoms of systemic lupus erythematosus (source: Mikael Häggström, used with permission)

Why it is still very poorly understood both by the public and by many within the medical profession?

Lupus is a very complex disease, and as a lot of the symptoms can mimic other conditions, there are no two lupus cases that are alike and symptoms can change over time. There are periods in a person’s disease where it can be not so noticeable and times when they flare up and it becomes more severe.

For a diagnosis of lupus to be made, the person needs to have 4 or more of the 11 classification criteria which include a combination of symptoms and blood tests.

What is the main mode of treatment for lupus, and which recent advances are there to be mentioned?

We now have a lot of research going into lupus, and we have a number of very successful medications at our disposal that suppress the immune system. We have access to a new biologic agent call belimumab which is the first licensed medication for lupus in 56 years and is used for our cohort of patients with high disease activity alongside rituximab and cyclophosphamide that are highly effective.

We have corticosteroids that can be used short-term to reduce inflammation caused by a flare in the lupus.

Hydroxychloroquine was initially used as an antimalarial; this is a very effective medication that can be used on its own or in conjunction with our other immunosuppressants.

Holistic care for Systemic Lupus in 2021 (source: Prof. Laurent Arnaud, used with permission)

Holistic care for Systemic Lupus in 2021 (source: Prof. Laurent Arnaud, used with permission)

You are one of a very few Lupus Specialist Nurses: How does one become a Lupus Specialist Nurse, and what does a normal working day look like?

I am the first Lupus Specialist Nurse here in Leicester, and I also look after the vasculitis and mixed connective tissue disease patients. I was approached for the role when I worked in research as I had some studies that recruited lupus patients and so had built up some knowledge around the complexities of the disease.

I have been in my role for 6 years now. I work very closely with three consultants, and we have established a connective tissue diseases clinic. We also have clinics that incorporate other specialist consultants including kidney, respiratory, skin and blood.

I operate a helpline that patients can ring when they would like advice, guidance and help surrounding their disease. I have clinics in which I can manage flares of the patient’s disease, changes to medication and lifestyle advice. There is an annual review clinic in which we monitor things such as a person’s cardiovascular risk, body mass index and lifestyle modifications.

A patient will have blood tests outside their clinic appointments for monitoring of their lupus. If a patient is flaring, then this needs to be actioned in a timely manner as a flare can be potentially life threatening.

Being a Lupus Specialist Nurse, to which extent do you work with patient associations, charities and other organizations?

My role was initially funded by Lupus UK so I have always worked very closely with them and have been guest speaker at their patient information days.

Here at Leicester we organize a patient information day annually for lupus awareness month, which includes a number of different specialist talks on a wide range of topics that can affect our lupus demographic such as mental health, diet, skin care and bone health, to name a few.

There is a local support group for our lupus patients that I liaise with that can help support those with new a diagnosis of lupus or those struggling with the disease.

Many thanks for your insights!

Childhood Cancer Awareness Month 2021: An Interview with Phil Brace (CEO The Little Princess Trust)

For this year’s Childhood Cancer Awareness Month, we spoke with Phil Brace, CEO of The Little Princess Trust. The UK-based charity provides real hair wigs free of charge for children and young people who have lost their own hair through cancer.

 

Why do you prefer real hair for children’s wigs to artificial hair?

When many children and young people are told they have cancer, often one of the first questions they ask is: “Will I lose my hair?”

This is because of the way our hair so closely defines who we are, and its loss can seriously affect someone’s confidence and identity.

Our wigs are made from real hair and are hand knotted to give a natural look which alleviates concerns that some children may feel from wearing a wig.

Real hair wigs can also closely resemble a young person’s hair before treatment – something many children want to replicate when choosing the fit, style and look of a wig.

What is the difference/difficulty with children’s wigs compared to adults’?

The main difference is the size of the wig cap. A child’s head will grow until they reach adulthood and so getting the right size is essential to ensure the wig fits properly and is comfortable for the recipient. Our wig caps come in seven different sizes to ensure we can find the right fit for the child.

Andrew Barton, one of the ambassadors of the charity (source: The Little Princess Trust)

Andrew Barton, one of the ambassadors of the charity (source: The Little Princess Trust)

Do you get enough hair donations or is the supply difficult?

We are very lucky to receive donations from all over the world to ensure we can provide wigs to children and young people. We encourage supporters to make sure they have a minimum of 12 inches of hair to donate. However, as our longest wigs are our most popular, we are always incredibly grateful to those who donate hair in excess of 16 inches.

How is it possible to give the wigs away for free?

As a charity, we do not have any paid fundraisers and so rely on the support from the public to fund our service. Many people ask family and friends to sponsor their haircut – and these donations help to raise the £550 it costs us to make, fit and style each wig.

What else helps children to come to terms with their illness?

We know from speaking to our wig recipients that family and friends can offer a brilliant support network to someone undergoing such a traumatic experience. There are also other charities where young people can speak to peers with similar experiences. But we know that each individual is different and handles things differently.

Several hair donations (source: The Little Princess Trust)

Several hair donations (source: The Little Princess Trust)

You support research into finding better treatments for childhood cancers, e.g., by cooperating with the Children’s Cancer and Leukaemia Group (CCLG). Which areas of research are you currently focused on?

In 2016, thanks to the huge efforts of our fantastic fundraisers and corporate supporters, we were able to start funding pioneering academics and institutions leading the way in researching new and better treatments for all paediatric cancers. An area where there is so much work which desperately needs investment. We have now committed more than £15 million across 80 projects covering a range of childhood cancers.

We are striving to improve patient outcomes through access to new treatments through clinical trials as well as improving existing treatments and are working incredibly hard to identify innovative and impactful ways to improve survival and reduce the effects of treatment. The Little Princess Trust works in partnership with the Children’s Cancer and Leukaemia Group (CCLG) to find the most suitable projects. Some of the areas we are currently focused on include developing innovative new treatments for difficult to treat types of medulloblastoma and trying to further knowledge of the evolution of neuroblastoma to improve treatment.

What have you been planning for Childhood Cancer Awareness Month this year?

For Childhood Cancer Awareness Month we have published news stories on our website which have been promoted on our social media platforms. We have talked about the research projects we fund, why they are so important and how we can only fund them thanks to the amazing support we receive. We have also featured some of the people we have helped on our website and focused on the work we fund.

Kyle Matchett, for example, is a lecturer in Molecular Immunology at Ulster University and has received funding from The Little Princess Trust to see if approved drugs can be repurposed to more effectively treat acute myeloid leukaemia. Kyle has returned the support and, throughout Childhood Cancer Awareness Month, he and his lab team are walking the equivalent distance to Barcelona to raise funds for The Little Princess Trust and raise awareness. We are following their progress on our social pages while talking about their vital work in the lab.

Many thanks for the insights!

Fertility Preservation in Young Cancer Patients: An Interview with Inken Hilgendorf (German Foundation for Young Adults with Cancer)

Fertility preservation is a major issue for young cancer patients undergoing treatment. We spoke with Inken Hilgendorf, MD, about the recent changes in legislation in Germany as well as further challenges for young cancer patients. Dr Hilgendorf is a hematologist and oncologist at the University Hospital Jena, head of the working party AYA-Network of the German Society for Hematology and Oncology, member of the board of trustees of the German Foundation for Young Adults with Cancer, and member of the European Network for Teenagers and Young Adults with Cancer (ENTYAC).

 

Since July 2021, fertility preservation for young cancer patients in Germany gets covered by their medical insurance. Why is this a milestone in post-rehabilitation support?

The previous lack of reimbursement was a very stressful situation for young adults with cancer. Every year, about 16,500 young adults in Germany are faced with the diagnosis of cancer and its treatment. Fortunately, about 80% of these young patients can be cured. In this context, fertility preservation is a crucial component of cancer survivorship care and can enable cured cancer patients to have their own children later in life. Thanks to the initiative and the great commitment of the German Foundation for Young Adults with Cancer, the costs of fertility-preserving measures for cancer patients are now covered by the statutory health insurance. However, the costs of ovarian stimulation medication for girls below 18 years of age are not covered by the medical insurance. This question needs to be resolved urgently.

Cryoconservation, fertility and treatment (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

Cryoconservation, fertility and treatment (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

Please tell us more about the interrelated aspects of fertility, cancer treatment and cryoconservation for young patients.

Most cancer treatments, like chemotherapy, radiotherapy or a combination of both, can damage the germinal tissue (ovaries/testicles) and germ cells (oocytes, sperm), putting adolescents and young adults with cancer at the risk of premature ovarian failure or azoospermia and subsequently of an irreversible loss of fertility. Therefore, fertility preservation should be proposed to young patients undergoing potentially gonadotoxic cancer treatment as early as possible. The different options of preserving fertility are shown in the figure below. The most appropriate option should be chosen depending on the individual characteristics of the patient (e.g., age, sex, diagnosis) and the planned treatment.

Methods of fertility preservation (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

Methods of fertility preservation (source: Deutsche Stiftung für junge Erwachsene mit Krebs)

 What is the status quo of fertility preservation in pre-pubescents? Is there a need to act? What can be done?

Prepubertal patients with cancer are also at risk of infertility. Therefore, the possibility of infertility following cancer treatment should be discussed with the parents/guardians of those children early. In order to preserve the reproductive potential of young girls, ovarian tissue cryopreservation can be performed. If a targeted radiotherapy in the pelvic area is planned, the transposition of the ovaries can be another useful option. In prepubertal boys, testicular tissue cryopreservation can be offered, although this option should be considered investigational.

How are other countries dealing with the issue of fertility preservation for cancer patients?

Overall, 38% of respondents of an online survey conducted by the joint working group of the European Society for Medical Oncology (ESMO) and the European Society for Paediatric Oncology (SIOPE) reported that their adolescent and young adult patients did not have access to fertility specialists. This figure was 76% in Eastern, 48% in Southern, 28% in Northern and 22% in Western Europe, respectively.

What does the future of fertility preservation and cryoconservation look like?

The field of germinal tissue cryopreservation is advancing quickly and may be a promising way to expand this procedure. However, optimal counselling from healthcare professionals should always be warranted and offered to each young patient undergoing potentially gonadotoxic cancer treatment.

Many thanks for your insights and the interview.

Sarcoma Awareness Month 2021: An Interview with Brandi Felser (The Sarcoma Foundation of America)

Sarcomas are a rare type of cancer growing in the connective tissue, i.e., cells connecting or supporting other kinds of tissues in the body. We spoke with CEO Brandi Felser of The Sarcoma Foundation of America (SFA) about the foundation, the everyday challenges that sarcoma patients face and Sarcoma Awareness Month. 

 

First of all, could you please tell us about The Sarcoma Foundation of America (SFA) as such, its aims, and your role within the foundation?

The three pillars of the Sarcoma Foundation of America (SFA) are: research, education and advocacy.

  • Research: SFA is an advocate for increased research to find new and better therapies with which to treat patients with sarcoma. As the leading funder of research in the sarcoma community, the organization raises money to privately fund grants for sarcoma researchers. Since its inception in 2000, the Sarcoma Foundation of America has invested over USD 13 million in research; including over 200 sarcoma research grants, eight American Society of Clinical Oncologists (ASCO) Young Investigator Awards, two Advanced Clinical Research Awards (ASCO) Conquer Cancer Foundation Awards, and two ASCO Conquer Cancer Foundation Career Development Awards.
  • Advocacy: SFA serves as the voice for the sarcoma community by educating legislators, federal and state agency officials, health and research communities, and the general public about the need for additional research and new therapies. SFA advocates for increased research funding for sarcoma both from the public and private sectors and works with government, for-profit and non-profit cancer organizations, and the biopharmaceutical industry to improve the level of awareness, interest, and investment in research for sarcoma.
  • Education: An educated and empowered community is key in efforts to bring change to the sarcoma landscape. Education not only aids patients and caregivers in advocating for their own care, but also helps to build a group of advocates who can work on behalf of others to raise awareness and influence research and drug development activities. SFA’s advocate education and engagement initiatives include thought-provoking in-person education sessions with esteemed speakers, interactive webinars, advocate/researcher networking at national meetings, and briefings on the latest developments in sarcoma research. SFA’s education program is a comprehensive program to provide patients with information and tools needed to be a leader in the sarcoma advocacy community.

The Race to Cure Sarcoma

SFA also hosts the Race to Cure Sarcoma event series, the premier run/walk series in the United States focused on raising awareness and research funds for sarcoma. The Race to Cure Sarcoma is made up of family-friendly run/walks held in cities across the nation. More than USD 1 million each year is raised for sarcoma research through the Race to Cure Sarcoma.

Sarcoma Facts Everyone Should Know (source: The Sarcoma Foundation of America)

Sarcoma Facts Everyone Should Know (source: The Sarcoma Foundation of America)

Why is sarcoma still considered to be the “forgotten cancer”?

Sarcoma has made significant progress over the last several years in terms of more research and therapies. However, sarcoma still suffers from inadequate investments in research funding to advance drug development, limited awareness about the disease, and limited sarcoma centers and specialists. All of these create challenges for sarcoma patients. Moreover, the rarity of the disease makes it difficult to generate research investment and awareness.

What are the everyday challenges that sarcoma patients face?

Treatment options are limited. Once a patient is diagnosed, getting treatment specific to their subtype is challenging. Sarcoma is curable by surgery (approximately 20% of the time), or by surgery with chemotherapy and/or radiation (another 30%), but about 50% of the time they are totally resistant to all of these approaches. For many subtypes, there is no therapy approved by the Food and Drug Administration (FDA). Patients suffer from limited treatment options and limited sarcoma centers to access treatment. The journey to diagnosis can be long, often taking years.

What can you tell us about pediatric sarcoma and the (unmet) needs of the young patients (and their families)?

Although still rare, sarcoma represents 15–20% of pediatric solid tumors with the most common tumor type being rhabdomyosarcoma. Risk factors for pediatric sarcoma include inherited disorders such as Li-Fraumeni syndrome, RB1 gene changes, and Neurofibromatosis type 1 (NF1), and past treatment with radiation therapy. Similar to adult sarcomas, treatment options are limited for pediatric patients. In addition, survivors of pediatric sarcoma face the challenge of lifelong health problems due to the cancer treatments that seriously affect their quality of life. These can include organ, tissue, and body function; growth and development; social and psychological adjustment; and second cancers.

Sarcoma Awareness Month (source: The Sarcoma Foundation of America)

Sarcoma Awareness Month (source: The Sarcoma Foundation of America)

July was Sarcoma Awareness Month: How did you perceive the awareness event, and what can we do after the actual awareness month?

Sarcoma Awareness Month is an important time for the community to come together to honor patients and survivors, remember the loved ones lost, and raise awareness about sarcoma. The sarcoma community wore yellow, engaged in educational activities, and shared stories about patient journeys and our loved ones. Thousands of members of the sarcoma community joined SFA for our National Virtual Race to Cure Sarcoma to help raise much needed funds for sarcoma research. The combined efforts of the sarcoma community were effective in educating the world about sarcoma and no doubt lifted the voice of sarcoma patients and survivors.

Our work to create change for the sarcoma community, however, cannot end there. The month of July, Sarcoma Awareness Month, is a time for the community to join forces, to unite and raise awareness about the disease. Importantly, it is also a time to unite and work toward more and better treatment options for all sarcoma patients.

But not just this month. Every month.

How and to which extent has the COVID-19 pandemic changed your work as well as the lives of sarcoma patients?

How we work as a team, in terms of not being in the office, has changed, but outside of that, mostly our advocacy and public policy focus. The pandemic made all of us re-think how we approach treating patients. Especially in sarcoma, it is important for sarcoma patients to be treated at a sarcoma center, which often means travel to that location. That became nearly impossible during the pandemic. Medical professionals and patients were forced to find ways to care for patients, and receive care, differently. This worked well in many aspects because the sarcoma community is already a very collaborative group. But it did crystalize that some of these changes should continue after the pandemic such as telemedicine, non-priority (scans, blood tests, even chemotherapy) being administered at a more local institution while being supervised by a medical professional who might be far away. We would like to see some of these changes stick. It can tremendously benefit sarcoma patients.

In terms of research funding and education, we are able to have those discussions and sessions via webinar so that actually made things easier for us and helped us to reach more people.

Many thanks for your insights!

World Hepatitis Day 2021: An Interview with Cary James (World Hepatitis Alliance)

For World Hepatitis Day, which takes place on July 28, we spoke with Cary James, CEO of UK-based World Hepatitis Alliance, about the global burden of viral hepatitis, means of prevention and testing, as well as the impact of COVID-19 on hepatitis patients.

 

Please tell us more about the World Hepatitis Alliance, its tasks, and the role of patients within the organization.

The World Hepatitis Alliance (WHA) is a global network of over 300 organisations from 100 countries, dedicated to eliminating viral hepatitis. We represent the people and communities impacted by viral hepatitis. Our global board members all have lived experience of viral hepatitis, and people living with hepatitis are at the heart of everything we do. Without putting the people and communities impacted by hepatitis at the centre of the global hepatitis response, all efforts will fail. Our main mission is to harness the power of people living with viral hepatitis to achieve its elimination.

How big is the global burden of viral hepatitis, being one of the world’s leading causes of death?

More than 320 million people are living with viral hepatitis globally, with 1.1 million deaths caused by hepatitis-related illnesses every year. Two-thirds of all liver cancer deaths worldwide are caused by hepatitis B and C.

If nothing is done to combat hepatitis, by 2040 it will cause more deaths than HIV, TB and malaria combined.

Although the current numbers are daunting, with the vaccine and effective treatments for hepatitis B and the cure for hepatitis C we have all the tools we need to prevent, test and treat hepatitis and achieve the elimination of viral hepatitis within the next decade.

The motto of World Hepatitis Day 2021: "Hepatitis Can't Wait" (source: World Hepatitis Alliance)

The motto of World Hepatitis Day 2021: “Hepatitis Can’t Wait” (source: World Hepatitis Alliance)

What needs to be done to achieve better prevention, testing and treatment or even elimination of hepatitis?

Ambitious targets were set by the World Health Organisation (WHO) in 2016 to see the elimination of hepatitis by 2030, including a 90% reduction in new cases of hepatitis B and C infections by 2030.

However, it won’t simply happen. Concerted efforts are needed to reach elimination and no one must be left behind. We need to raise more awareness of hepatitis and encourage people to come forward for testing. 290 million people are living with viral hepatitis unaware of their diagnosis; we need to find them and link them to care.

Health systems need to look to redevelop and become person-centred, working with and for their communities to make the health system accessible to all those that need it.

Currently only a handful of countries are on track to achieve elimination by 2030. There is a common thread across all of the countries on track. That is a strong civil society presence at all levels of planning and implementation of hepatitis elimination strategies coupled with the political will to act. Collaboration between governments, international organisations and the civil society is key. As well as putting the people affected by viral hepatitis at the heart of the solution.

Global funders also need to join the fight so that low- and middle-income countries can respond to the hepatitis crisis in their countries.

Which impact does/did the COVID-19 pandemic have on the lives of patients with hepatitis?

People living with hepatitis were left unable to access essential medicines during the pandemic; we also saw a drastic fall in testing availability.

We have also seen a drastic impact on the delivery of the hepatitis B birth dose vaccination. Modelling conducted by Imperial College London and WHO warned that, in a worst case scenario, the pandemic could cause an additional 5.3 million hepatitis infections and an additional 1 million hepatitis B related deaths later on.

The COVID-19 crisis has affected the availability of hepatitis services, impacting harm reduction services, testing availability, treatment access and vaccination delivery. Civil society organisations and other frontline hepatitis service providers have also seen their ability to raise awareness and fundraise impacted by the pandemic.

Civil society organisations are a key contributor to national hepatitis elimination programmes in many countries. A reduction in their capacity means there are fewer people being tested, and many people living with hepatitis are unable to access life-saving treatment.

The COVID-19 crisis has revealed many of the weaknesses in health systems around the world. It is our collective responsibility to learn from this crisis and to evolve health systems to better serve us all. Hepatitis elimination must not be left behind.

World Hepatitis Day 2021: "Let's eliminate hepatitis by 2030" (source: World Hepatitis Alliance)

World Hepatitis Day 2021: “Let’s eliminate hepatitis by 2030” (source: World Hepatitis Alliance)

Are those patients more at risk of contracting a COVID-19 infection, and should they therefore get vaccinated or rather not (and why)?

The main global liver medical societies have advised that viral hepatitis is a serious underlying medical condition. People living with it might be at higher risk from severe case of COVID-19. They should speak to their medical provider about getting vaccinated against COVID-19 as soon as vaccination is available to them.

In 2021, the theme of World Hepatitis Day is “Hepatitis Can’t Wait”. Why?

Every 30 seconds, a person loses their life to a hepatitis-related illness. The “Hepatitis Can’t Wait” theme highlights the need to accelerate hepatitis elimination efforts, especially during the COVID-19 pandemic. Alongside this, it also highlights the social injustice and inequity caused by the current lack of action on hepatitis elimination and focused on the action needed to get on track to meet our 2030 elimination goals. This campaign demands urgent action from all stakeholders and the general population to tackle hepatitis.

What has the World Hepatitis Alliance planned or already put to action concerning World Hepatitis Day on July 28?

The World Hepatitis Alliance has developed campaign resources, including posters, social media graphics and videos that people can use to raise awareness locally and on social media. We also have several events planned, including a webinar series and a global virtual relay, which will see the hepatitis community create a chain of video messages following World Hepatitis Day as it travels from New Zealand to Hawaii, showing the global community working to combat hepatitis.

Many thanks for your time and for the insights.

World Sjögren’s Day 2021: An Interview with Linda Stone (Sjögren Europe)

This year, World Sjögren’s Day is on July 23. We spoke with Linda Stone of Sjögren Europe about the challenges of the chronic inflammatory immune disease, the empowerment of Sjögren’s patients, and the organisation’s plans for the awareness event.

Please tell us more about Sjögren Europe and its vision.

Sjögren Europe was formed in 2019 as a federation of properly constituted national Sjögren’s patient organisations.

Six of the seven Board members have Sjögren’s, and we are all active in our own national associations. We are also all active in differing ways in a variety of research projects. Our collective experience covers the range from project team through patient advisory group to patient subject. The members of the Board and the Medical Board are all volunteers. Funding comes solely from modest member fees plus donations and discretionary grants from Pharma industry.

Sjögren Europe’s purpose is “to increase visibility, attention and solutions for Sjögren’s Syndrome by promoting the advancement of knowledge, research, information, treatment and care, by fostering patient involvement and participation in scientific research, medical, health, political institutions, pharmaceutical industry and social areas, and by increasing awareness about Sjögren’s Syndrome at all levels.”

The ideal is for Sjögren Europe to be accepted at the table whenever and wherever within Europe Sjögren’s is being considered.

What exactly is Sjögren’s, and is there maybe an overlap with other diseases?

 Sjögren’s is a chronic inflammatory immune disease which presents in diverse ways. The common recognised symptoms are dryness (especially eyes and mouth) and fatigue (approximately 70%), but this is too simplistic. Sjögren’s can develop to impact one or more of several major organ systems, for example, lungs, gastrointestinal system, bladder and peripheral nerves. Research is ongoing to see if phenotyping sufferers predicts the likelihood of developing such serious effects in the future. The different phenotypes may indicate the probability of response to therapy.

Currently, there is no agreement amongst patient groups about overlap syndromes. Is it a result of Sjögren’s or a separate disease? Similarly, there are a number of differing opinions within the relevant medical professionals.

World Sjögren's Day infographic (source: Sjögren Europe; iceberg designed by Freeepik)

World Sjögren’s Day infographic (source: Sjögren Europe; iceberg designed by Freeepik)

What are the challenges of Sjögren’s, for example regarding diagnosis and treatment?

 Receiving a diagnosis is challenging. The heterogeneous nature of Sjögren’s seriously complicates diagnosis, frequently leading to misdiagnosis and or significant delays in receiving appropriate care. There are not enough rheumatologists with an interest in, and knowledge of Sjögren’s to ensure that every patient receives the best care. Access to medication is variable from country to country as is access to additional care such as dentistry (lack of saliva results in vulnerability to tooth decay), ophthalmology (poor tear film leads to corneal damage), hydroxychloroquine monitoring, physiotherapy, etc.

Treatment is mainly symptomatic – eye drops, emollients, secretagogues, etc. Currently, there are no treatments to halt disease progression let alone reverse it or cure the sufferer. Research into potential new treatments is problematic. The heterogeneous presentation has caused difficulties in identifying trial outcomes that are measurable, reproducible and meaningful for both researcher and patient. Projects are still endeavouring to produce a useful set of Patient-Reported Outcomes (PROs) which will aid research into treatments to alleviate Sjögren’s.

What is important for empowering the patients to have the utmost quality of life possible?

Living with Sjögren’s is difficult, protecting dry eyes and mouth, moisturising dry skin, and coping with enveloping fatigue. Life is exhausting, and this is before even taking into account its long-term effects on the body together with the various diseases of age and the continual battle for access to appropriate care and treatment. Patient support groups play a significant role in guiding patients and empowering them to manage their disease and have the best possible quality of life.

The overall impact on family and personal life is immense. Socialising is limited by fatigue and difficulty coping with smoke and air conditioning. Photophobia is commonplace. Keeping sufficiently hydrated can be difficult but adequate fluid is essential to ensure that medication and food can be comfortably swallowed.

The variation in presentation and difficulty in achieving a diagnosis create a further challenge. Sjögren’s is not recognised by welfare authorities as a disease meriting disability benefit. This lack of recognition results in financial hardship for some severely affected sufferers at a time when they are most in need of help.

First General Assembly of Sjögren Europe in Madrid during the EULAR congress in June 2019 (source: Sjögren Europe)

First General Assembly of Sjögren Europe in Madrid during the EULAR congress in June 2019 (source: Sjögren Europe)

Why can’t Sjögren’s be regarded as a rare disease as such?

Sjögren’s is considered to be a rare disease by some, and not so by others. As knowledge of the prevalence and incidence varies from country to country, and estimates vary even more, it is difficult to be definite. What is agreed is the variation in presentation which could influence the view of clinicians.

What does Sjögren Europe plan for World Sjögren’s Day on July 23 to raise further awareness of the syndrome?

World Sjögren’s Day on 23 July is a wonderful opportunity to promote understanding of this devastating disease and help sufferers. This year, Sjögren Europe launched its campaign on 14 June with a webinar on fatigue. This has been followed up by a series of posts on social media. These posts are based on “15 Types of Fatigue” by Teri Rumpf PhD. The campaign will culminate on 23 July with the publication of a booklet, authored by Prof Rinie Geenen, offering advice and tips on how to manage Sjögren’s fatigue. This will then be augmented by a leaflet summarising Teri Rumpf’s 15 types of fatigue.

Many thanks for the interview and for your insights.

Gastrointestinal Stromal Tumor (GIST) Awareness Day 2021: An Interview with The Life Raft Group

This year, Gastrointestinal Stromal Tumor (GIST) Awareness Day is on July 13. We spoke with Carolyn Tordella of the non-profit organization The Life Raft Group, based in the United States, about the rare cancer GIST, the vision of the group, and its plans for the awareness events.

First of all, please tell us about The Life Raft Group as well as its aims and mission.

The mission of The Life Raft Group is to enhance survival and quality of life for people living with GIST through patient-powered research, education and empowerment, and global advocacy efforts. The Life Raft Group vision is to champion patient-powered science and drastically increase long-term survivorship for all cancer patients.

To accomplish this, we rely on four key pillars:

  1. Leverage the patient perspective to drive innovative solutions in cancer research
  2. Educate and empower patients to take a larger role in their care
  3. Accelerate research outcomes through collaborative efforts
  4. Increase access to effective treatments worldwide

The Life Raft Group started in 2000, when a handful of patients in the early Gleevec trials began sharing their experiences online. Many patients had been misdiagnosed with leiomyosarcoma and were just now finding out they had an entirely different cancer – gastrointestinal stromal tumor, or GIST. Sharing their stories and experiences online helped them in a variety of ways, including gaining much-needed support while facing a rare disease and managing the side-effects of a new drug. In the next two years, this group formed a newsletter and Web site to share information with an even wider audience, before formally incorporating in June 2002. Over the years, The Life Raft Group has grown immensely, meeting the challenges facing GIST patients and caregivers and the research community every step of the way.

What is particularly demanding about GISTs in adolescents and young adults (AYA)?

Adolescents and young adults can present with rarer subsets of GIST that can be non-responsive to drug treatments that may be used in mutations that occur most often in older adults. Cases in adolescents and young adults comprise less than 15% of all GIST cases per year and can include diagnosis of cancer syndromes such as Carney Stratakis Syndrome and Carney Triad. These cases can be indolent (though there are exceptions), hereditary or somatic, and there are few treatment options beyond surgery, and also not many clinical trials are available for such patients. The greatest challenges may be coping with extensive surgery and the side-effects from those surgeries and the challenges of the lack of treatments and clinical trials.

GIST DO IT Walk in New Jersey, 2019 (source: The Life Raft Group)

GIST DO IT Walk in New Jersey, 2019 (source: The Life Raft Group)

In your opinion, what needs to be changed to pay heed to the unmet needs of patients with GISTs?

Our goal is to establish mutational testing for our patients as a protocol for all GIST patients. Our Biomarker Testing campaign for 2021 is to bring awareness of the importance of mutational (biomarker) testing to patients and oncologists. Uncovering the driving force behind each individual’s tumors is not just important, it is critical. Biomarker testing is an opportunity to improve and optimize treatment – possibly avoiding unnecessary treatments and getting to the right treatment sooner. Currently, biomarker testing rates in the gastrointestinal stromal tumor patient population are relatively poor – only about 26.7% of patients have had testing done. The Life Raft Group Patient Registry, which is a group of extremely proactive patients, notes only about 53% of patients are aware of their mutation.

You can read more info on this important campaign here and here.

What are you planning for GIST Awareness Day on July 13? Why are awareness days and campaigns important?

Despite all the work done by our amazing members and friends to date there is still a huge lack of education and awareness that exists within the medical community and general public about GIST. The ultimate goal of GIST Awareness Day is to bring so much attention to GIST that knowing what it is will no longer be so “rare”. GIST Awareness Day serves as the yearly pinnacle of our education, awareness and advocacy efforts and provides those outside the GIST community a chance to learn about and lend their support to this important cause.

GIST Awareness Day 2021 (GAD) – We have planned a GAD TikTok Challenge, plus we’ve also provided ideas for our members to GIST DO IT all year long.

hashtags: #GISTAwarenessDay #TimeToGetTested #ItsTime

Please let us know more about the GIST Patient Registry, GIST Collaborative Tissue Bank, the GIST Trials Database, and Project Surveillance, as featured on your homepage.

GIST Patient Registry

The GIST Patient Registry is a natural history study that is updated and curated regularly from the date of diagnosis throughout the patient’s lifetime.

The GIST Patient Registry is an ongoing research study where GIST patients and caregivers from all over the world volunteer their information regarding their GIST treatment. This information is used to understand the natural history of GIST, treatment outcomes, and to help accelerate research with our Real World Evidence Data.

Since The Life Raft Group is not limited by the design of traditional clinical trials, we have significantly increased flexibility in the areas that we can examine. Because our GIST Patient Registry is only driven by patient-reported data, we are better at following patients for prolonged periods of time and across institutional boundaries causing a significant impact in reaching and understanding real-life issues that come up daily in the patient’s journey. This strong connection allows us to track traits of the disease that are of concern to the GIST community. The data collected allows us to educate/advocate patients in the decision making and treatment options for their disease.

Perhaps more importantly, by moving beyond the role of patient advocates to become patient scientists, we are changing the medical research environment. We are claiming a voice at the decision making table and influencing what research is being done and how it is being conducted.

GIST Collaborative Tissue Bank

The GIST Collaborative Tissue Bank brings together GIST researchers and GIST patients in a unique partnership. For patients, it’s an opportunity to reach leading researchers with one tissue donation. For researchers, it’s an opportunity to access tissue linked to GIST clinical histories and to share valuable tissue and critical data. This collaboration maximizes the value of donated tissue and research time.

GIST Clinical Trials

A data-driven website to help patients navigate GIST clinical trials. The Life Raft Group and its volunteers have developed GIST Trials, a free, easy-to-use clinical trial database designed to provide patients, caregivers, and members of the public current information about clinical research studies relevant to GIST. It contains information about clinical studies being conducted throughout the United States and in many countries throughout the world.

Project Surveillance

The Project Surveillance Group is a global collaboration of 40+ physicians, clinicians, researchers, surgeons, and other medical professionals who communicate digitally to discuss, brainstorm, and work through difficult issues in GIST treatment. This group aims to close critical time gaps in research and practice, by forming a collaborative platform for GIST experts to share real-world, real-time observations in a timely, actionable manner. Enhanced by the patient-provided data from The Life Raft Group’s Patient Registry, the project combines patient and clinician brainpower.

Many thanks for your time and for the interview.

World Vitiligo Day 2021: An Interview with Yan Valle, CEO of the Vitiligo Research Foundation

This year, World Vitiligo Day was held on June 25. We spoke with Yan Valle, CEO of the Vitiligo Research (VR) Foundation and author of the book “A No-Nonsense Guide To Vitiligo”, about the work of the foundation and the skin disease which causes a gradual loss of skin color on different parts of the body.

 

Please tell us more about the Vitiligo Research (VR) Foundation as well as its inception and goals.

The VR Foundation is non-profit organization, aimed squarely at vitiligo. We educate, we support, we care.

The foundation was born from the determination of one man – Mr. Dmitry Aksenov, philanthropist – to help his daughter, who was diagnosed with vitiligo at an early age. After years of trying and failing to find an effective treatment for his daughter, Dmitry took this challenge personally.

In 2010, Dmitry Aksenov started the Vitiligo Research Foundation to facilitate therapy development for his daughter and millions of other people who suffer from vitiligo. I was invited to lead the company since its early days, and I’m honored to serve as its CEO for over ten years now.

While we are not alone at aiming at vitiligo, I think we are unique in the interdisciplinary approach that we have. The VR Foundation operates as a semi-virtual company, with a small internal staff managing research, clinical and educational programs in several countries. Our team members often wear several hats.

Because we are a donor-supported organization, we do not have the luxury of the behemoth R&D budgets of the Big Pharma. But we have funded an early-stage vitiligo research that laid a solid foundation for many other research projects, and attracted top talent into this obscure field of dermatology.

Perhaps, we are better known for the World Vitiligo Day campaign that we launched in 2011 and continue to coordinate at the international level.

 

Source: Art project “Facemotions” by Stephanie Corne

Source: Art project “Facemotions” by Stephanie Corne

 

What is vitiligo, what are its causes, and how can those affected find help and/or treatment?

Vitiligo is a generally unpredictable, non-contagious, lifelong skin disease that causes a gradual loss of skin color on different parts of the body.

The true causes of vitiligo are still unclear. Over 50 genes are involved in the immune system response and pigment cell production. It is beyond our current ability to understand a complex matrix of numerous genes interactions that result in a vitiligo patch.

We know the cause is pre-wired in the genes, just waiting for a bad luck moment. An obscure triggering event creates stress in the pigment-producing cells of the skin. An over-reactive immune system mistakenly identifies these stressed-out cells as intruders. Specialized cells called “T-cells” neutralize these “enemies”, driving progressive skin depigmentation.

In about the half of all cases, the real cause of vitiligo remains unknown. In the other half, psychological stress is the most frequently reported trigger for vitiligo. Environmental factors, physical skin damage and hormonal changes are often correlated with vitiligo onset. Prolonged contact with certain chemicals may also induce or worsen vitiligo; they are commonly found in hair dyes, perfume, cosmetics, detergents, cleansers, rubber slippers and plastic wearables.

There’s currently no cure for vitiligo; however, white spots on the skin can be minimized with a range of treatments. Simply put, patients can do one of three things with vitiligo: try to restore pigmentation, camouflage the white patches, or destroy the remaining color to have all-white skin.

Light therapy remains a “gold standard” but it may take anywhere between 8 to 16 months to restore natural skin color. Experimental treatments like afamelanotide, HSP70i, prostaglandin or simvastatin work better for someone with darker skin color. Topical Janus kinase (JAK) inhibitor from Incyte looks very promising but the company just started its registration process with the U.S. Food and Drug Administration (FDA). Dietary supplements, herbal mixes or vitamins are incapable of creating a lasting effect on their own; they can only mildly speed up effectiveness of the main therapy.

Sadly, white lesions frequently reappear when treatment is discontinued. Relapse is occurring in nearly half of all patients after 4–6 years of successful treatment.

Vitiligo should ideally be treated within two or three months of its first appearance, because as the condition progresses it becomes harder – but not impossible! – to treat. Even decades-old vitiligo spots may be re-pigmented with enough patience.

What are the challenges faced by those suffering from vitiligo?

Vitiligo has an overwhelming impact on the life of over 100 million people worldwide, causing severe mental trauma and often leading to depression, alcoholism, self-isolation and thoughts of suicide. Social neglect, bullying at school, workplace challenges are known all too well to nearly every vitiligo patient.

People in developing countries bear the greatest burden due to the risk for misdiagnosis of the disease, little to no access to effective treatments, widespread stigmatization and discrimination.

Source: Indonesian Society of Dermatology & Venereology

Source: Indonesian Society of Dermatology & Venereology

On your website, you name vitiligo as a “forgotten” disease. Why?

Many people call vitiligo the “forgotten disease” because there’s so little understanding and awareness about it. R&D funding into vitiligo needs to significantly improve – and not just on new medicines – but also on psychological interventions.

The situation has started to change recently. The U.S. FDA held its very first public meeting on vitiligo, where the community had a unique opportunity to speak directly to key stakeholders in vitiligo drug development. Another indication of the success of the vitiligo community efforts is that 18 U.S. State governors and numerous city mayors declared June “Vitiligo Awareness Month”.

However, there is still much work to be done and the VR Foundation aims to persuade major organizations such as the United Nations (UN) and the World Health Organization (WHO) to give vitiligo the attention it deserves.

What did the VR Foundation do for this year’s World Vitiligo Day, which was held on June 25?

Since its inception, the VR Foundation coordinates the global World Vitiligo Day campaign, while national and local vitiligo support groups organize conferences, walks, picnics, parades, and other events.

Unfortunately, the large-scale, in-person activities that typify World Vitiligo Day were not possible this year, due to COVID restrictions, so online events took place everywhere: in India, Kazakhstan, Kenya, Nepal, Nigeria, South Africa, UK and USA. Support groups from France and Hungary organized offline events.

Each year World Vitiligo Day is officially hosted by a different city. In 2021, Jakarta, Indonesia, acted as campaign virtual headquarters. In 2022, Mexico will take its turn to host the World Vitiligo Day celebrations.

Many thanks for your time and for the interview.

Inflammatory Bowel Disease: An Interview with Professor Fergus Shanahan

On the occasion of World Inflammatory Bowel Disease (IBD) Day we spoke with Fergus Shanahan, who is Professor and Chair of the Department of Medicine at University College Cork (UCC), Ireland. He was the Director of APC Microbiome Ireland from its foundation as the Alimentary Pharmabiotic Centre in 2003 until May 2019.

Furthermore, he has published the books “Fast Facts: Inflammatory Bowel Disease” (for health care professionals; together with David S. Rampton) as well as “Fast Facts for Patients and Their Supporters: Inflammatory Bowel Disease” with Karger. Both resources are freely available online.

 

Dear Professor Shanahan, May 19 is World IBD Day. Why is this awareness day so important?

In general, one might be forgiven for feeling saturated, weary or wary of awareness campaigns. They are not uniformly successful; nor are they always desirable. Some are counterproductive, particularly if words are not matched with deeds. However, I believe it is timely and appropriate to remind policy makers and health service managers of the needs of people with non-Covid disease, such as inflammatory bowel disease (IBD). Covid restrictions have been particularly hard on adolescents and young adults – the same age cohort most affected by chronic inflammatory disorders, such as IBD.

Awareness of their plight is particularly important now because Covid has become a convenient excuse for poor health service to non-Covid patients. No one disputed the need to cancel elective surgery to conserve hospital resources during the Covid crisis. But ‘elective’ does not mean ‘non-essential’ or ‘unnecessary’. The fickle nature of words is seldom appreciated by decision-makers distant from the front line, but it is critical to the welfare of non-Covid patients, particularly those with IBD. Patients with IBD have critical requirements which may be categorized as elective, but which are essential. Lack of awareness or attention to this urgency on the part of service managers and policy makers may jeopardize the health of many patients.

Could you please tell us about current and possible future approaches in treating inflammatory bowel disease?

I am an optimist in relation to the treatment of inflammatory bowel disease. One may be confident that the science of medicine will continue to advance. One can also project the increasing use of personalized strategies tailored for the individual needs of patients. Moreover, greater precision is likely as medical science begins to address the interaction of host genetic susceptibility (human genome) with the microbiome (the host’s other genome). I anticipate that the focus of research will shift toward risk prediction and prevention. In that regard, the most striking epidemiological fact concerning the occurrence of inflammatory bowel disease is its emergence as societies undergo socio-economic development.

In my view, we owe it to the developing world to try to prevent the emergence of Crohn’s disease and ulcerative colitis in such areas of the globe as they undergo modernization. Lessons learned in the developed world should be applied to disease prevention in the developing world. Greater attention must be paid to diet and other lifestyle factors that increase the risk of inflammatory bowel and other chronic inflammatory disorders, by modifying the microbiome. This much we can be confident of. Sadly, while the science of medicine will continue at pace, it seems less likely but equally desirable that the humanity of health services will progress at the same rate.

What impact has the current Covid-19 pandemic made on your work and on the lives of your patients?

In my view, patients with non-Covid disease have borne the greatest burden during the pandemic. This has led to delayed diagnosis and sub-optimal care. This has not, of course, been restricted to IBD; it has applied to all acute and chronic medical disorders. The medical profession and health services have tried to respond and mitigate the situation with virtual remote or telemedical consultation. Much can be achieved by use of virtual consultations and it is probable that this technology will continue post-Covid.

However, it is clearly suboptimal in many circumstances. Elderly patients have difficulty with virtual and digital devices for communication and may stay away. Others find it difficult to explore sensitive issues with their doctor that they would otherwise have divulged in a face-to-face consultation. Likewise, virtual communication places the clinician at disadvantage when unable to perform a physical examination and observe critical non-verbal communication cues and other signals from their patients.

What does patient centricity and empowerment mean for your daily work and your relationship with your patients?

There are numerous asymmetries in a patient-doctor interaction which I discuss in my book on “The Language of Illness”, published by Liberties Press, Dublin, in 2020. The most obvious of these is the fact that the consultation is often a crisis for the patient, while routine for the doctor. Knowledge was once another source of asymmetry but no longer. Patients can now acquire knowledge from more accessible sources; instead, they rely on their doctor for wisdom, perspective, advocacy, and guidance.

Sadly, language is a neglected source of asymmetry. Language should connect patients with their doctors, not separate them. The most elementary step in empowering a patient is to use a common language. Too often, doctors use disease-speak whereas patients speak in terms of illness; illness being the lived experience of disease. Patient centricity is impossible if the patient feels that he/she speaks a language that differs from that of their doctor.

In the blurb of your book ‘The Language of Illness’ you are quoted as being ‘enough of an expert to be wary of experts’. Could you explain what you mean by this?

My book “The Language of Illness” deals with many aspects of the inadequacy of medical language in addressing illness – the lived experience of disease. For me, an expert has achieved a commanding understanding of his/her field such that they can explain it in clear language to everyone. However, true experts also have sufficient understanding to be aware of how much and how little they know. A true expert will frequently say: “I don’t know”.

I believe that knowledge may come with arrogance whereas true expertise is more often accompanied by humility. My wariness relates to the distinction between true experts and presumed experts. The distinction is important when the stakes are high, such as for patients with significant illness. My advice to people seeking a suitable doctor to manage chronic illness is always the same: choose a doctor who is interested in you and your condition and who is sufficiently knowledgeable to admit what he/she does not know.

Many thanks for your participation!

Bladder Cancer Awareness Month 2021: An Interview with Lydia Makaroff (Fight Bladder Cancer UK)

Each May, Bladder Cancer Awareness Month is a time to increase awareness of the disease, to raise funds for bladder cancer research, as well as to focus on patient education, support, treatment and care. In order to commemorate this important awareness event on The Waiting Room, we spoke with Dr Lydia Makaroff, CEO of Fight Bladder Cancer UK.

 

As an introduction, please tell us a bit about Fight Bladder Cancer, i.e., its inception, current situation, and goals, as well as your own role within the charity.

Fight Bladder Cancer is a dynamic, patient-led charity. We work to ensure that everyone affected by bladder cancer – patients, carers, family and friends – has a place to come to for support, information and advice. We ensure that someone is speaking up for them when key decisions are made about policy, care, and research.

We continue to work hard delivering the legacy of Andrew Winterbottom, a determined bladder cancer patient who saw the lack of patient leadership for bladder cancer in the UK and worked with his wife to form this charity from their garden shed in 2009.

As the CEO, I am responsible for managing the day-to-day operations of the charity, guided by our board of trustees. The majority of our trustees are patients and carers, who ensure that Fight Bladder Cancer continues to be driven by insights from people directly affected by bladder cancer.

What can be done about bladder cancer, also by the patients themselves?

Finding bladder cancer early makes it much more treatable. The main symptoms of bladder cancer are blood in pee, needing to pee frequently, pain or burning when peeing, and repeated urinary tract infections. If you have one of these symptoms, it’s probably nothing serious, but you should still speak to your GP or family doctor.

Many of the symptoms of bladder cancer are the same as those experienced by people with a urinary tract infection, urinary stones, cystitis, or prostate problems. It is important to use several tests to rule out more straightforward conditions before diagnosing someone with bladder cancer.

 

Fight Bladder Cancer UK

Source: Fight Bladder Cancer UK

 

What does your organization do regarding bladder cancer?

Fight Bladder Cancer has a vision of a future where everyone survives bladder cancer, and lives long and well. Our mission is to lead the fight against bladder cancer, driven by patient and family insights. We support people affected by bladder cancer, advise on research, raise awareness, and advocate for changes in health policy.

In your opinion, what are the overlooked needs of patients with bladder cancer?

We have found that over half the people with bladder cancer have never heard of the disease before they were diagnosed. People with bladder cancer need to know that they are not alone – there is a whole community of other patients out there.

They need to be able to have frank conversations with their medical team about all the aspects of their life that will be affected by bladder cancer, including peeing, sex, and body image. Patients need to know what treatment options are suitable for their particular situation, sit down with their medical team to discuss their own unique preferences, and jointly make a decision about which treatment is best for them.

 

Fight Bladder Cancer UK

Source: Fight Bladder Cancer UK

 

Why is a bladder cancer awareness month important and what are you offering for this event?

Bladder Cancer Awareness Month is important because it raises the profile of this neglected cancer. This vital month is a platform through which everyone can hear about the symptoms of bladder cancer – blood in your pee, repeated urinary tract infections, and increased frequency or pain when weeing.

Our signature colour for awareness month is orange! Whether you bake an orange cake, arrange a vase of orange flowers, or dress up in orange and go on a Wee Walk – please share your photos on social media with the hashtag #BladderCancerAware.

Take a moment on the 31st of May to blow beautiful bubbles, capture a picture, and share it on Twitter using the hashtag #BubblesForBladderCancer and tagging us @BladderCancerUK.

For more ideas, take a look at our 31 Days of May Activity Calendar.

On a personal note, what made you want to get involved with and work for Fight Bladder Cancer?

While I was living in Belgium, Andrew Winterbottom and I worked together for many years to raise the profile of bladder cancer in Europe. When he was diagnosed with terminal cancer, he encouraged me to move to the UK and apply for the role of CEO of Fight Bladder Cancer. It has been an honour to continue his legacy, and work to improve the lives of everyone affected by bladder cancer.

Dr Makaroff, many thanks for your time and for the interview!

World Irritable Bowel Syndrome Day 2021: Spotlight on an Often Underdiagnosed Condition

On World Irritable Bowel Syndrome (IBS) Day (April 19), and in accordance with IBS Awareness Month, we spoke with Dr Kevin Barrett, general practitioner in Rickmansworth, Hertfordshire, UK, and primary care commissioner as well as chair of the Primary Care Society of Gastroenterology. He was the Royal College of General Practitioners (RCGP) and Crohn’s and Colitis UK lead clinical champion for the 2017–2020 Inflammatory Bowel Disease Spotlight Project.

 

Please tell us more about irritable bowel syndrome (IBS) and its causes. What distinguishes it from inflammatory bowel disease (IBD), and why shouldn’t these two be confused with another?

Irritable bowel syndrome is a functional bowel disorder which means there is no (as yet) identifiable pathology. It is common and affects up to 1 in 10 of the population. IBS can usually be divided into diarrhoea-predominant (IBS-D), constipation-predominant (IBS-C) or mixed, and it is likely to be a cluster of conditions with similar symptoms rather than one disease entity alone. Inflammatory bowel disease is an uncommon (approximately 1 in 140 people) multi-system inflammatory disease that appears to be triggered by a combination of genetic susceptibility and an unidentified environmental trigger. IBD follows a relapsing-remitting course and can affect the skin, eyes, joints and liver as well as the bowel. Crohn’s disease and ulcerative colitis are the two main subtypes of IBD. Neither IBD or IBS have a known cure but there are treatments that can help both diseases. It is important to make a correct diagnosis as the symptoms can also overlap with colorectal cancer, ovarian cancer, endometriosis, coeliac disease, microscopic colitis and other pelvic or gastrointestinal conditions.

Which modes of treatment are available for IBS?

Lifestyle change is the cornerstone of treatment for IBS wherever possible. Relaxation and finding ways to de-stress are important. Eating regularly and avoiding known trigger foods are a good starting point. Reducing fibre intake (while still aiming to achieve the recommended 30 g/day for adults) can make a difference. Dieticians may be available to help, particularly when guiding patients through the low-FODMAP elimination and re-introduction pathway. Antispasmodic medications can be of benefit, and medication for constipation or diarrhoea can help. Sometimes antidepressant medications are used as the gut has similar receptors to those in the brain, and psychological therapies such as cognitive behavioural therapy (CBT) can have high success rates.

From your experience, what are the do’s and don’ts when dealing with patients suffering from IBS?

The key is not to assume that there is a one-size-fits-all approach or to promise that the first treatment one recommends will work. A trial-and-error approach is needed, and it is important to explain that some patients’ symptoms have different triggers, hence the reason for having a wide range of therapies available to use. Building trust and a positive rapport is important. It is, however, vital that enough investigations are undertaken to exclude other pathology, and to review new symptoms that develop, as patients may have more than one gastrointestinal disease.

In your opinion, what can patients with IBS do themselves to alleviate their symptoms, to possibly change their lifestyle, and to improve their quality of life? Where can they find help?

There are a great deal of myths about IBS and an enormous number of diet books and internet articles about IBS which shows that many patients are affected and that they may have lost faith in traditional medical therapies. In order to maintain trust, it is important to signpost patients to reputable sources of information such as The IBS Network. Talking to others about their symptoms is important as IBS can cause anxiety in social situations and affect work, relationships and social lives.

How has the current Covid-19 pandemic made an impact on your work as a doctor? From your point of view, how has it changed the lives of your patients since last year?

Covid-19 has had an impact on all our lives; immunosuppressed patients with IBD have had to shield and had stricter restrictions on their lives than the majority, stress for all has been higher and this has led, unsurprisingly, to an increase in IBS-type symptoms. Many patients have been reluctant to seek health advice for worrying symptoms because of the fear of contracting Covid-19 from healthcare environments, and the change to a remotely delivered healthcare service has widened the divide between the IT-savvy and those unable to access technology. Endoscopy waiting times have soared and there has been an increase in the proportion of cases of colorectal cancer detected at a late stage. It’s not all bad news though; there are signs of greater collaboration between primary and secondary care which can only be a good thing for patients.

On a personal note, what made you want to become a gastroenterologist and/or general practitioner when starting your career?

When I went to medical school I wasn’t sure what kind of doctor I wanted to be. I was attracted to general practice because of the variety and the ability to look after patients over decades. Gastroenterology was something I was exposed to at an early stage of medical school, and it has cropped up time and time again over my career. I also like to champion the underdog, and gastroenterology doesn’t get the interest or funding like the glamorous specialities of cardiology or diabetes, but we have all known the impact the gastrointestinal symptoms can have on our lives.

Dr Barrett, many thanks for the interview!

Dr Claire Beveridge

Dr Claire Beveridge is an editor and writer with over 15 years’ experience, and is an Advanced Professional Member of the Chartered Institute of Editing and Proofreading. With a PhD in Biochemistry, she specialises in helping organisations communicate ideas clearly and concisely for maximum impact. She founded Beveridge Editorial Services in 2013 and, since then, has worked with individuals, publishing companies and organisations worldwide, including leading universities, the World Health Organization, the UK Standards and Testing Agency (UK Department for Education), and the International Baccalaureate. She lives in Oxfordshire with her daughter.

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