Open source DIY help, access and stigma

At the ATTD 2022 conference, diabetes advocates gave presentations on open source AID, access to insulin and diabetes supplies, and diabetes stigma in the #dedocº Symposium.

It’s hard to prepare for life with diabetes when you’re first diagnosed. There are countless drugs, therapies, devices, and management techniques to learn when first trying to understand this condition.

Open-source or DIY (DIY) automated insulin delivery (AID) is one such option that could improve a person’s experience with diabetes, according to Dana Lewis, maker of the DIY Pancreatic System (#DIYPS) and founder of the open-source artificial pancreas system movement (#OpenAPS). While not for everyone, open-source DIY AID allows people with diabetes to create and customize their own AID systems using existing technology and algorithms, while adapting them to their lifestyle.

Lewis presented the evidence and consensus on open source AID at the #dedocº Symposium on the opening day of the Advanced Technologies and Treatments for Diabetes (ATTD) 2022 conference in Barcelona, ​​Spain. #dedoc° was founded in 2012 by Bastian Hauck, who created the Twitter hashtag #dedoc to host weekly chats for the German branch of the Diabetes Online Community (DOC). This year #dedocº curated the symposium, chaired by a diabetes lawyer Renza Scibiliaas a way to record the voices of people with diabetes at the conference.

Open source AID

Lewis described how she built an AID system for herself in 2014, improved it over the years and has been using it for herself ever since. Recognizing the significant benefits of AID, Lewis started a movement to encourage people with diabetes to build their own systems. There are now thousands of people around the world using AID and according to Leis there are an estimated 48,892300 recorded hours of people using open source AID.

She emphasized the potential that open source AID has to help people with diabetes. Retrospective studies show that after switching to AID, time in range improves, and many people find that they experience a reduction in A1C, hypoglycemia, and hyperglycemia. These results also continue to improve over time for those using the system. This evidence and data has led to a consensus statement on open-source automated insulin delivery, which concludes that open-source AID is “a safe and effective treatment option” that “reduces the burden of living with diabetes.”

“People with diabetes are not static,” Lewis said. †We are all very different. We have different lifestyles and open source AID can support that.

To truly maximize the benefits of open-source AID, people must have access to insulin and the necessary components to create their AID system.

“The technology is there. We have scientific evidence for it, we agree that it is safe and effective,” she said. “Now we need to make sure people can access it if they choose to use it. People with diabetes can’t afford to wait.”

Access to insulin and diabetes supplies

Access to insulin and diabetes supplies remains an issue and Emma Klatman, the global policy and advocacy manager at Life for a Child, discussed its importance in another presentation at ATTD 2022 entitled, “I wish we all knew that access to diabetes care is a human right.” .”

Life for a Child, a non-governmental organization, supplies insulin and diabetes supplies to 45 countries around the world and supports more than 34,000 young people with diabetes, as well as work in research and advocacy. As someone who has had type 1 diabetes for 23 years, Klatman personally knows how important it is for people to have access to insulin and these diabetes supplies.

Access to diabetes care is rooted in international human rights law. Far too many people with diabetes around the world cannot rely on their government and health systems to keep them alive and thriving,” Klatman said.

While researchers and doctors work every day to improve the lives of people with diabetes, important topics such as access and advocacy are often ignored.

Klatman explained that while access to diabetes care is a clear human right, “governments don’t robotically make meaningful policies based on international standards… They have to be turned on, they have to be pushed really hard sometimes to do the right thing for people with diabetes.” .” Because of a government’s often slow response to social and cultural norms, sustained advocacy is essential to drive long-lasting change.

diabetes stigma

However, there is another barrier to accessing and using beneficial technology and medicines that is often underexposed, and that is the stigma that people with diabetes are unfairly experienced. Matthew Garza, the editor-in-chief at the diaTribe Foundation, spoke about diabetes stigma during his ATTD 2022 presentation, explaining that Addressing diabetes stigma is an essential missing element of diabetes care.

Simply put, “diabetes stigma exists everywhere,” Garza said.

Stigma is found in how people with diabetes are portrayed in the media, in conversations with friends and colleagues, and in the clinical setting, and even within the diabetes community. Stigma is also directly linked to how we talk about diabetes and to people with diabetes. People with diabetes are all too familiar with comments about their body weight or shame about injecting insulin and wearing pumps on their skin.

Regardless of the source, “stigmatism has a real impact on mental and physical health, leading to anxiety, anger, low self-esteem, loneliness and anxiety,” Garza said. Diabetes stigma can also lead to poorer diabetes self-control and attempts to hide one’s condition, ultimately resulting in poorer clinical outcomes.

Recognizing the consequences of diabetes stigma motivated Garza and the rest of the diaTribe team to launch dStigmatize.org in February 2022. The website is a comprehensive resource for understanding, reducing, and ending diabetes stigma. It explains what diabetes stigma is, why it is harmful, and provides personal stories and guidance on how to fight stigma. The website’s goal is to encourage people to “create a culture of compassion that helps people with diabetes live well with a serious but manageable condition,” Garza said.

A core component of dStigmatize is the personal stories on the site, which Garza hopes will humanize the condition and ultimately change the story so that people no longer have misconceptions about diabetes.

The dStigmatize team also wants to focus on changing the language people use when they talk about diabetes. Research shows that the language we use around diabetes can do real harm. This is why Garza encouraged people to use language that is neutral and non-judgmental and based on facts, actions and physiology or biology.

“Language is always evolving, and it’s time we evolved with it,” he said.

You can watch the entire #dedocº symposium, including Lewis’ presentations on open-source AID, Klatman on access, and Garza on stigma here.

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