The American Diabetes Association’s Scientific Sessions is here! Until June 29, scientists will present some of the most updated topics, from beta cell replacement to immune therapies to complications, all with the result to change things for the type 1 diabetes (T1D) community. Here are Drs. Jennifer Sun, Dana Lewis, and Christine Wang to share their key takeaways from day 3, with their commentary in the video and below:
Jennifer Sun, M.D., MPH
Associate Professor, Harvard Department of Ophthalmology, Joslin Diabetes Center, Boston, MA
Diabetes Retinal Disease—Changing Before Your Eyes
This session gave insights into the newest and most cutting edge research about diabetes and diabetic retinal disease, both from the clinical and research standpoints. Dr. Sun started off talking about treatment of preproliferative diabetic retinopathy [i.e., eye disease]. This is a hot topic in the field, as many of you know, with the advent of anti-VEGF and steroid intravitreal medications. We have very good treatments for late-stage disease, proliferative diabetic retinopathy, and diabetic macular edema.
A big question now is should we be treating eyes with earlier stage disease? A couple of large randomized trials have shown that starting with anti-VEGF treatment earlier can actually reduce rates of future vision threatening complications, but the jury is still out as to whether or not this will result in long-term vision improvement in our patients, so many of us are not routinely recommending this early treatment at this time, but there will be more data coming this way.
We talked about new grading scales. The fact that we have these new treatments means that we’re pushing the envelope of treatment back into earlier stages of disease. This will necessitate a better understanding of the disease taking advantage of all of the new imaging modalities and new molecular information that we’ve gathered over the last few decades. There are active efforts underway looking at trying to revamp our current disease severity scales and staging systems.
Dr. Vujosevic and Dr. Fort talked about additional aspects of diabetic retinal disease in terms of the neural components, which is again, I think being more and more recognized that in addition to vascular components, which have typically been used to clinically characterize diabetic retinal disease that there they’re very important neural components that really drive visual function in our patients.
Dr. Saaddine talked about diabetic retinopathy and youth, again, a very important topic as we’re seeing an increasing rate of diabetes in our young patients, which puts unfortunately more patients at risk for diabetic retinopathy and vision loss over time.
Dana Lewis, D.O.
Who Should Loop? Pro/Cons
I’ve been living with diabetes for more than 18 years, and I’ve been using an open source AID [automated insulin delivery] system since 2014. There are now thousands of people using these systems. You may have heard of open APS, Android APS, or Loop, which are three kinds of open source AID systems. The sessions that I’ll be talking about reflect on all three open source AID systems.
The first session was by Natalie Bellini, who talks about the nuts and bolts of automated insulin delivery. From a perspective of a clinician who is actually supported dozens of patients using open source systems. She talked about patient selection and working with patients who need to understand the risks, as well as the benefits of this technology and willingness to use this technology, even if they don’t consider themselves a technical expert.
And, like I said, she has dozens of patients who are using open source AID systems. Some of whom came to the clinic specifically for support, but also many patients who chose to go on open source systems after talking with their provider team. She also talked about the role of the healthcare provider, recognizing that providers can use different tools such as Tidepool or Nightscout to help them analyze patterns and blood glucose data for patients using these systems. She also talked about the role of healthcare providers to provide education, to optimize using the open source system, just like a commercial system, that the provider would need to learn how to use and how to support patients with open source systems. Also have a learning curve for providers to learn about.
Another presentation was from Anna Norton, [M.S.,] who talks about her lived experience of choosing to use an open source automated insulin delivery system. But Anna wasn’t necessarily an early adopter of this open source technology, but she is now a user of this technology in part because when her insulin pump came up for renewal, her insurance actually denied her choice of pump. So she ultimately chose to go the open source route using technology and supplies that she already had. She talked about both the benefits of this technology, but also some of the downsides, which included the fact that her pump was no longer on warranty, she didn’t have insurance approval for it, and she was concerned about what her endocrinologist would say. She also talked a little bit about that first conversation with her endocrinologist, where she asked for compassion rather than permission, telling her provider that she was choosing to use the open source technology. She made a deal with her provider and brought back data, showing the provider what the open source system could do for her.
I got to talk about a perspective of looping being for everybody who wants to do it, while recognizing that not everybody will choose an open source system or automated insulin delivery technology. And that’s totally fine. But for those who are interested, there is quite a bit of data now ranging from case studies to observational studies, as well as randomized controlled trials, looking at the open source, automated insulin delivery technology. Just because it’s open source and DIY doesn’t mean that there isn’t also evidence, and there’s now quite a bit of evidence, not only for adults, but also there’s growing bodies of studies, looking at the pediatric or kid populations and also special use cases, looking at how open source automated insulin automated insulin delivery can help people with exercise, experiences like pregnancy, and many other life situations. There’s also studies looking at using these systems in a fully closed loop mode, meaning that people don’t have bolus, carb count, or meal announcement when using these systems.
I also found in a study last year, that what people are frustrated by, sometimes in commercial AID, is also what is found in open source and why some patients choose open source, flexibility of targets, flexibility of choice, which is one of the things that Natalie talked about in her presentation. I think choice is important. When people are talking about choosing open source automated insulin delivery systems, it’s important to recognize that we don’t choose to have diabetes. Once we have diabetes that requires insulin, that adds a significant amount of risk to our lives because human error and just the challenges of dealing with insulin means that there can be error at any given time. Having an automated insulin delivery system, open source or commercial, can actually reduce the risk quite a bit, even though it adds its own little bit of risk, there’s ultimately a net risk reduction in this choice of technology.
The final presentation was from David Maahs, [M.D., Ph.D.,] who talked about provider concerns and his perspective on supporting patients or addressing open source automated insulin delivery with patients. He talked about the role of the health care provider and patient relationship, recognizing that how providers see their role with patients obviously influences the conversation they may have around open source automated insulin delivery. He pointed out that patients should have autonomy and, as long as they have a good understanding of the risks and benefits, that’s their right to choose how they treat diabetes, whether that’s insulin pen, pump, or an automated insulin delivery system, whether that be open source or commercial. He also talked about the role of justice, pointing out that the burden of diabetes is very widely distributed, and there are some AID systems that are approved and available commercially in some parts of the world, but not all. And having a commercial system available in the market doesn’t necessarily mean that insurance is going to approve it for patients and cover it, or that it will be affordable. In some cases, the open source automated insulin delivery systems are actually increasing access and improving affordability of this technology for people living with diabetes.
He also talked about the data from the real world, showing that these automated insulin delivery systems have been shown safe and are known to increase time-in-range and potentially reduce A1c, in addition to the benefits of quality of life. He again talked about patient autonomy and the ability to support the choice of patients, this technology or otherwise, and recognizing that there may not be commercial support of this technology, but there is extensive community support.
On that note, I’ll just mention that Natalie made this list of resources for healthcare providers, but it’s also a great list of resources for anybody interested in learning about open source or DIY technology. There are resources for people looking to learn about a particular open source system, and there’s also global resources to help you learn about automated insulin delivery. I hope, if you listen to this, you’re a little bit more interested in technology and please reach out to the community and ask questions. There’s plenty of people happy to answer questions about open source automated insulin delivery. Thank you.
Christine Wang, Ph.D.
Psychology Research Fellow, Children’s National Hospital, Washington, DC
When COVID-19 Clashes with Diabetes—Data and Experiences Regarding the Impact on People with Diabetes
I was able to study the impact of COVID-19 on parents, particularly parents of young children with type one diabetes. In the study that we conducted, we actually reached out to parents twice during the pandemic. So once over the summer of 2020, and then another time over the winter of 2021, and we were interested in seeing what their functioning was like during the pandemic, in terms of their mood, their COVID-related distress, as well as their experiences with positive and negative diabetes experiences. Being in quarantine: Was that making diabetes easier? Was that making diabetes harder to manage for parents? By the time the winter rolled around, we also were really interested in parents’ perceptions of the vaccine. Were parents planning to get the vaccine for their children? If so, were there any concerns?
We had about a hundred parents that we talked to. We initially recruited these parents when their kids were newly diagnosed with type 1 diabetes. All the kids were around one to six at the time of diagnosis. By the time they actually completed our study, they were actually between seven, eight years old.
We found that COVID was hard for some parents throughout the pandemic. We found that people’s mood didn’t really change. Their negative diabetes experiences didn’t really change and their COVID-specific distress also did not change. We did find that there was actually a decrease in positive diabetes-specific experiences. This was something that parents were reporting at the beginning of the pandemic. “Oh, there’s more time to make healthy meals. There’s more time to manage diabetes. There’s this silver lining, if you will, around being at home.” Then that silver lining got less shiny as time went on, which makes a lot of sense. I think we can all relate to that a little bit. In terms of perceptions about the vaccine, what we found by February or March, 2021, that about 30% of families had already had a parent or an adult get the vaccine.
If parents had declined a vaccine in the past, then they were also more likely to say that they had a lower intention to get the COVID-19 vaccine for everybody in the family. If parents had higher vaccine hesitancy, they also were less likely to say that everybody in the family was going to get vaccinated against COVID-19. This is a really interesting study, because it’s the only one that we know of that examined parents and vaccine hesitancy in a pediatric chronic illness group.