Making Space for People With Diabetes at Scientific Conferences
When people with diabetes are included at large medical conferences, it shows the power and expertise that comes with lived experience. Groups like #dedocº are making this a reality, however there are still barriers to overcome.
“If you go back, dear friends, not farther than 10 years, imagine having a dedicated symposium in a scientific meeting like EASD, by people living with diabetes for people living with diabetes where they can raise their voices and say, ‘nothing about us without us,’” said Dr. Chantal Mathieu, the president of the European Association for the Study of Diabetes (EASD) as she kicked off this year’s #dedocº symposium at the EASD 2024 conference.
For a long time, the world of academia, research, and medicine excluded people living with the very conditions being studied and discussed at academic conferences. There was an untrue assumption that lived experience was not as valuable as scientific expertise. However, as Mathieu said, at least in the world of diabetes, this is starting to change.
This is largely due to the work of organizations like #dedocº, an international community by and for people with diabetes. They facilitate an online community and have several initiatives aimed at increasing the presence and voice of those with diabetes at the world’s largest conferences.
These initiatives include their #dedocº voices scholarship program, which grants diabetes advocates from all over the world a scholarship to attend conferences like the American Diabetes Association (ADA) Scientific sessions and EASD. It also includes their #dedocº symposium, a dedicated session at four major diabetes conferences where advocates are given a platform to speak on topics that they care about most.
Through these initiatives, people with diabetes are not only given a seat at the table, but a chance to learn about the latest advancements in diabetes. This opportunity to be present at conferences also means that the scientific information presented by healthcare professionals and researchers can be curated, translated, and shared with the wider diabetes community in a way that is easier to understand and is relevant to their lives.
Making sure that people with diabetes are at these conferences is crucial to elevating the importance of lived experience. Whether that means adding context to how the latest technology and medications work in the real world or elevating topics such as diabetes stigma or DIY looping that are often ignored or undervalued at these conferences – including people with diabetes in the conversation is vital.
A great example of this was the #dedocº symposium at this year’s EASD 2024 conference. During the symposium, four type 1 advocates gave powerful presentations on a wide variety of topics that rarely get the attention they deserve. These topics included the organization INNODIA (a global network of academic institutions, industry, community organizations, and people with diabetes working to cure type 1 diabetes), the importance of family systems and community connections (including the work of the Diabesties Foundation in India), the experience of managing a pregnancy and having diabetes, and the power of using art to advocate for awareness and positive change.
However, even with all the work that has been done to make sure people with diabetes can attend these conferences, there are still barriers to overcome.
One very large barrier is making sure that people with type 2 diabetes, and less common forms of diabetes, are also included in these discussions and in advocacy efforts around diabetes.
As Bastian Hauck, the founder of #dedocº, acknowledged during the EASD symposium, only about 20% of #dedocº voices have type 2 diabetes, even though over 95% of people with diabetes have type 2. And even though there are amazing advocates with type 2 diabetes, there is far less representation than there should be. That doesn’t mean that people with type 1 diabetes should speak on behalf of those with type 2 or other types of diabetes, but that more space should be made in advocacy work to include all of these voices.
Renza Scibilia, a type 1 diabetes advocate and Director of Community Building & Communications, Global Access at Breakthrough T1D (formerly JDRF), further expanded on this idea.
“I will never lead [type 2 advocacy] because I am not a person with type 2 diabetes. I can’t speak to that experience, but I promise you I will support whatever you are doing,” she said. “That is how our community is stronger, when we support each other.”
Mark Tiller, a type 2 diabetes advocate based in the U.K., emphasized why this is so important.
“Treat type 2s with respect,” he said. “The two conditions aren’t the same, but that doesn’t mean one is any less serious. And nobody with type 2 diabetes chooses to have diabetes.”
Although there is still work to be done to make sure that people with every type of diabetes have the same opportunities to add to the conversation, it is clear how vital their voices are. When the voices of lived experience are included together with medical and scientific expertise it improves outcomes and makes the lives of people with diabetes better.
Learn more about diabetes advocacy and breaking barriers around stigma here: