The first #Dedoc Symposium at ATTD2022 was just amazing. 3 wonderful and talented presenters gave us insights into topics such a open source automated insulin delivery, access to diabetes care as a human rights and the issue of language and stigma when talking about diabetes.
Renza Scibilia from Diabetes Australia opened the session and introduced the presenters.
Tadej Battelino from Slovenia also spoke briefly about the role of the patient. There are often too many barriers for patients, too many things between the products and education and the patients themselves. What both diabetes companies and healthcare professionals are now beginning to learn and understand is that unless a solution is accepted by people living with diabetes, it doesn’t work. It may have taken them a decade to understand it but a change is finally coming. Even the best technological innovation will be useless if it isn’t accepted or actually useful for the end user. It is us, the people living with diabetes, who decide if a new therapy or device is helpful and meaningful for our lives or not.
Tadej Battelino concluded with an appeal to all the healthcare professionals and companies to listen to their patients, and that the patients are the most important community at ATTD.
After this strong introduction, Renza introduced Dana Lewis as the first presenter.
Dana is the creator of the “Do-It-Yourself Pancreas System” (DIYPS) and spoke about the open source automated insulin delivery system, articifial pancreas and the importance adaptability for each person’s life choices.
She explained how she first built her own APS system in 2014 and how back then, there wasn’t much of a choice at all for people living with diabetes, only the commercially available systems.
Now, in 2022 there are several systems to choose from. And thanks to hundreds of volunteers working together to create these loop systems and working on documentation, connectivity and usability, there are now an estimated 48 thousand hours of open source AID experience accumulated.
The systems also keep evolving, because people living with diabetes are not static – we are active, we have many different lifestyles, we need different ways to manage our diabetes to increase quality of life.
Many studies were done on the DIY APS systems and the findings were an improvement of Time in Range and a reduction of A1C, as well as sustained improvement in blood sugar control. This means that improvements don’t just happen when you first start to use the system, but they continue to be effective in the longterm. The systems work for children and adults, during pregnancy and sport or endurance activities and result in an overall improved quality of life for people living with diabetes – as proven by the studies Dana mentioned.
There was even an international consensus statement on automated insuly delivery systems, citing that open source AID is a safe and effective treatment option and that they respect the patient and caregivers’ autonomy and choice. The statement also addressed healthcare professionals’ responsibility to learn about all treatment options for diabetes management, including open source. Dana also pointed out that if healthcare professionals are unfamiliar with open source, don’t have the relevant resources or feel unsure about the systems, they should consider cooperating with other healthcare professionals or referring the patients to HCP with more experience, as patients should always have the right of choice for the best care possible. The statement also included a reminder for realistic expectations from everyone involved (patients, caregivers, family members, healthcare professionals) and that the user goals should always be discussed and clarified when working with open source AID.
Dana then went on to show the similarities of commercial automated insulin delivery systems and open source automated insulin delivery systems. While both types offer support, have different pump and cgm options and have a lot of research and scientific evidence behind them, only the commercial AID have regulatory approval. The open source AID however allow for a greater interoperability with other devices and are transparent in just exactly how the system operates. All users of AID system should have access to all of their data.
She also talked about the discussion about risks when using diabetes technology. People living with diabetes already face a certain level of risk daily in their management, but automated insulin delivery systems can actually help to lower that risk, causing a net risk level reduction.
Dana concluded by also addressing the elephant in the room we are all aware of – the cost of everything. Insurance coverage for pumps, cgms and supplies is still very low in most countries, or not supported at all. Therefore, if we want to improve the quality of life for people living with diabetes, we not only need to develop different solutions but also make them available and accessible for everyone.
The next presenter was Emma Klatman from Life For A Child, who spoke to us about access to diabetes care as a human right, everywhere in the world. Emma has been working with Life For A Child for 6 years and they provide support to 45 countries across the globe.
She shared what pillars of human rights law are applicable to health and the responsibilities governments face in regards to health policies. The Right to Life and the Right to Information also form a core part to this argument. Emma then explained how these pillars also apply to people living with diabetes. If the right to health is a fundamental human right, why do people living with diabetes not have access to the necessary supplies and equipment?
Access to insulin, diabetes management supplies, diabetes care and information are codified by the human right to health, life and the right to non-discrimination, so governments and pharmaceutical companies should work to address these issues as well.
Emma specifically focused on diabetes technology availability in low income areas and that we must prioritise those furthest behind towards equity first, to close the gap in accessibility. For this, data-driven advocacy can help, showing exactly how technologies can not only save governments money in the long run, but also hugely improve the quality of life for the patients.
Access isn’t the only issue though – education is another. Even if the most robust tools are offered, how useful are they if people don’t know how to access or use them.
Emma concluded by talking about advocacy and how our voices matter. Many types of diabetes advocacy apply to human rights as well, and people living with diabetes need allies. The whole diabetes ecosystem needs reminding, pushing and collaborating. Emma also advised that while advocacy is not glamorous; on the contrary, it is arduous and challenging, our voices matter, each bit of fighting matters, that we can collaborate and push for change, but also, that it takes time for long-lasting changes to become visible.
The last presenter for the Dedoc Symposium was Matthew Garza from Diatribe, who spoke about diabetes stigma.
Many people heard diabetes jokes from people who aren’t living with diabetes. Whether something sweet is ‘diabetes in a cup’ or we hear of stigmas about Type 1 and their injections o devices they are wearing, the ‘good kind’ and ‘bad kind’ of diabetes, Type 2’s stigma due to weight bias, diet, that they brought it on themselves – in short, stigma is everywhere.
Even within the community, there is a lot of stigma in how different diabetes groups relate to each other and there is still a big divide between them or some groups trying to distance themselves from other groups.
Diabetes Australia has done a lot of work to raise awareness about language and the words we use to describe and talk about people living with diabetes. Healthcare professionals need to be more aware of how they relate to their patients, but also for us as people living with diabetes it is important that we become aware of our own stigma too.
Stigma has a very real impact on mental and physical health. It can lead to low self-esteem, self-blame, anger, worry and anxiety, as well as embarrassment and depression. Stigma and jokes about diabetes also lead to more discrimination in people’s everyday lives. Learning to address stigma and working on overcoming it is therefore icredibly important to improve quality of life for people living with diabetes.
Matthew then shared the story of a patient with a high HBa1C of 13% who was told by her healthcare professional that she will never be able to do anything about her diabetes, as she can’t exercise due to her arthritis, that she obviously wasn’t eating right and that he wanted to walk her down to bariatric surgery right now. Imagine finding out that the one person you hoped would be able to fix everything, has already given up on you.
This sort of bias and stigma against people with diabetes not only impacts their mental health but actually leads to behaviour that is detrimental to their own physical health. This includes attempts to conceal their diabetes, worse self-management of diabetes, psychological insulin resistance, reduced social and occupational functioning and worse clinical outcomes.
Words do more than reflect reality – they create reality. Research actually shows that the language used about diabetes can cause harm to people living with diabetes.Therefore it is important that we use language that is neutral, nonjudgmental and based on facts, actions, and physiology. Language is also always evolving, so we should evolve with it.
After these amazing presentations, the floor opened up to panel discussions and questions from the audience. Several points were discussed such as the speakers’ experiences with stigma and bias, and a reminder to the healthcare professionals in the audience:
Words are remembered, and how healthcare professionals treat us, stays with us. For the healthcare provider it might just be 1 appoinment in a long day, but for us patients, the words stay with us for a very long time.
Thank you so much to all the speakers and presenters for their research, dedication and advocacy in raising the patient’s voice and reminding healthcare professionals what is important in diabetes care – the people living with diabetes, the community and the work we can do to improve accessibility and education for all.