On the occasion of this year’s World Obesity Day (March 4, 2022) we spoke with Vicki Mooney, patient advocate and Executive Director of the European Coalition for People Living with Obesity (ECPO). ECPO is working collaboratively across Europe to improve the lives of people who are living with and are affected by the chronic disease of obesity through advocacy, policy and education.
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Can you please tell us how the European Coalition for People living with Obesity (ECPO) came into existence?
The European Coalition for People living with Obesity really originated from a meeting in 2013 in Sofia, Bulgaria, which was at the European Congress on Obesity, where a number of patients and national advocates came together. They were invited by the scientific and clinical community and really to unite that patient voice and see how we could integrate that and work and co-create really with the scientific community there. Now, I will admit that we were all a little bit anxious, wondering why a patient community would be brought in. But over the years, we have seen how working together hand-in-hand has created change and driven awareness of obesity as a chronic relapsing disease.
In 2019, ECPO was actually launched. Our coalition was launched as that group of national voices that were coming together to be that authorative patient voice in Europe. And here we are now.
ECPO’s aim is to change people’s attitudes and advocate together for acceptance, education and disease recognition. What are you doing to achieve this?
Through our work, what we aim to do is to improve quality of life for people, to drive awareness of disease, to educate people. And the way we do that is working with our other communities, sister communities such as EASO, working with people in the liver community, in the diabetes area, and ensuring that people are aware that obesity is a chronic relapsing disease. A number of our advocates lead national programs where they are involved in advocating on the national level for disease awareness. And we’ve seen that wonderful work in Germany and Italy over the last number of years.
We also have a number of committees, such as stigma committees and communications committees, where we can ensure that we’re disseminating all of the information correctly. Now, as we work with the scientific community, and obviously that’s not ideal for our patient communities where the language may not be as plain as we would like. And what we do is, we break that down into simpler terms and language, so that the average person can actually engage, and can get involved, and can understand the complexity of obesity and not just the scientific terminology. So, by working together, coming together and building more advocates, more representatives of patients, and connecting them with the communities they need, we are raising and driving awareness.
What are ECPO’s plans for World Obesity Day?
I’m quite excited that on this World Obesity Day we have been in a position to give out a number of grants to the tune of over EUR 25,000 to our patient communities. Now, these are for the national organizations where they can take the toolkit that we have worked on with EASO on the World Obesity Day EU website. They can take all of those materials, they can have their own event where they drive awareness for people to act, as well as for us at ECPO.
We worked on a number of videos with the patient community to show the quality of life after a patient has received treatment for obesity. As we know, we talk and we see lots of national plans on prevention for obesity, which is tremendous. And we need this. But we also need to focus on treatment for people who live with obesity. So, these videos will highlight that. They come in from Switzerland and Germany, from Spain. There are various countries involved. We’re quite excited to launch these. And, of course, we will have on World Obesity Day our own patient lounge, which we will launch from Brussels itself, and focus on a little newscast, jumping in and out of these countries to see what is happening on the ground in perhaps Slovakia or France. Or even with our colleagues from Sweden down to Italy.
The motto of this year’s World Obesity Day is “Everybody Needs to Act”, following last year’s motto “Everybody Needs Everybody”. What are your thoughts on these mottos?
I think these mottos are very simple and direct, and I think for anybody, whether or not you’re aware of obesity as a chronic relapsing disease or not, you would look at it and say: “Well, why do I need to act?” And I think it’ll instill that question in people’s minds where they’ll probably say: Actually, hold on. I have a responsibility as well to engage, to stop using stigmatizing language, to, stop presenting in a way that is stigmatizing to people living with obesity. Or perhaps actually to be an advocate, to become an advocate and support national plans for driving change. So, these models will help us in getting the message across to people that now really is a time to act for your loved one or your family member or even your colleagues or that person in your life that has obesity and has been met with barriers all along the way of your life.
How has the current pandemic affected the quality of life of people living with obesity?
The pandemic has actually been quite challenging and put a lot of, unfortunately, barriers in the way for people living with obesity. As we know, with various other chronic diseases and illnesses, there was no stopping of treatment. However, unfortunately, with people living with obesity, if they are on a treatment plan, perhaps for surgery, or for some other intervention that got pushed back. And this has been probably the biggest disappointment for people who have obesity, where suddenly you’ve gone from waiting a number of years to meet a multidisciplinary team, the pandemic hit, and resources were given elsewhere, and you’re back on a waiting list. And I think on top of that as well, whether or not you’re somebody who is genetically, predisposed to having obesity, which we know 70% of people are who have obesity, whether or not that is, you’re part of that. Everybody was locked down, everybody was at home, and your activity may have stopped. The gym will have shut down. You know, everything got set back and people’s health wasn’t at the forefront. We didn’t have doctors coming on telling people to get out and go for a walk and have a healthy mindset and go to the vegetable stalls and the markets, because that was not possible.
So, if you’re somebody who hasn’t got obesity, that was a challenge. Can you fathom how hard that was for somebody who has overweight or has obesity and therefore actually didn’t have the support they needed? And for people like myself – I gained weight through lockdown because all of my support broke down. Other than having the support of the national advocates who did an online support group for people with obesity, to encourage us to stay in that stronger mindset that change will come and we will get the support back. So, it has been challenging.
Thank you very much for your time and your insight.