Polina Bryson is a healthcare professional and D-mom at California, whose school-age daughter lives with type 1 diabetes and celiac disease. She’s been passionate about both fronts about keeping up with the latest research and technology for T1D, and now brings us this record of knowledge and inspiration from a recent conference.
A Guest Post by Polina Bryson
I just returned from the Taking Control of Your Diabetes (TCOYD) summit in San Diego. As most of you know, TCOYD is a nonprofit organization that provides patient and supplier diabetes education around the country. It was established by prominent San Diego endocrinologist Steven Edelman, who himself was diagnosed with type 1 diabetes at age 15. TCOYD has supplier and individual demonstrations happening at precisely the same time, so I went in wearing two hats. Being a clinical psychologist by trade, and also a so-called Type 3 by virtue of owning a 10-year-old daughter with type 1 diabetes, I decided to split my time between the provider and individual workshops, focusing largely on the T1D track. Even though this was my third time at the summit and second year attending both kinds of demonstrations, I learned a great deal. Below is a summary of my takeaways.
Type 1 Diabetes Research Is Diverse
The panel of four prominent physicians and researchers — Steve Edelman, Jeremy Pettus, Michael Gottchalk, and Howard Zisser (who’s currently Medical Director at Insulet) — provided an excellent overview of “the latest and best” research advancements. When Dr. Pettus noted that when he started presenting research at TCOYD a few decades back, he had been worried about not having enough to discuss. There is not time! Absence of a cure in the near future notwithstanding, new research is promising and exciting.
Beta cell encapsulation clinical trials in people are penalized since last year, with efficiency results expected around 2020. Recent attention has focused on the link between bowel bacteria and diabetes, which might assist in creating prevention and early detection strategies. Another field of research focuses on slowing the progression of diabetes and preserving beta cells in recently diagnosed patients. And needless to say, artificial/bionic pancreas trials (currently being ran in real-world settings!) Are currently moving full speed ahead. This is but a sampling of research studies. There’s a whole lot of evidence-based hope that in another 3-4 years the artificial pancreas technology will provide the bridge into some T1D cure.
Currently Available Technologies and Treatments are Underutilized
Dr. Edelman said that about 75% of people with T1D are still on multiple daily injections (MDI), and the huge majority are not using continuous glucose monitoring technology (CGM). I might live in a bubble, but these numbers were
Shocking to me. We obtained our daughter onto a pump and CGM shortly after her diagnosis, and we’ve surrounded ourselves with people, both online and in real life, that are current on and eager to try out the latest technology. In my experience and opinion, it makes our lives easier and our daughter’s diabetes control more effective and safer.
When it comes to type 2 diabetes (T2D), the issues are similar. Many oral agents can be found but few are fully taken advantage of. Few people with T2D are on insulin or a pump, although many more might benefit from those therapies.
Reasons for this underutilization include a broken healthcare system which denies people access to treatments and medications, poorly informed healthcare providers, and the social stigma and shame about diabetes which frequently gets in the way of people taking the medications they require. We’ve got quite a ways to go to eliminate the barriers to treatments that people with diabetes frequently confront.
Patient and Provider Frustrations are Two Sides of the Same Coin
There was a provider-patient workshop titled “Bad Doctor, Good Patient; Good Doctor, Bad Patient!” Facilitated by Dr. Edelman and Susan Guzman (co-founder of the Behavioral Diabetes Institute), which was informative, lively, and fun. People with diabetes (PWDs) and medical care providers (HCPs) openly aired their grievances and then discussed what works. Lately, PWDs and HCPs expressed shared themes of what drives them mad about the other side. Both teams expressed feeling disrespected.
PWDs spoke about their experiences of not being listened to being blamed and shamed, and not given enough time or focus to deal with their concerns. HCPs vented about patients that refuse to follow recommendations, lie about taking their drugs, and act in demanding and demeaning ways. Another theme that emerged was that of unrealistic expectations. PWDs talked about their feelings of never doing well enough despite their very best efforts. HCPs expressed how they’re expected to present easy and quick fixes which don’t exist. Finally, both sides expressed a great deal of burnout and stress.
What works? Finally it boils down to clear communication and collaborative teamwork involving PWDs and HCPs. When both sides treat each other with respect, listen to one another, discuss their concerns with honesty and sensitivity, and also work together on mutually agreed goals, everybody wins.
Occasionally Patients Know Greatest
It had been eye-opening to sit during the Clinical Management of T1D Workshop for Providers, facilitated by Dr. Edelman, Then attend a similar workshop for patients, eased by Drs. Edelman and Pettus. The supplier information was
Rather fundamental: pros and cons of pump treatment and distinct pumps accessible, advantages of CGM, how to calculate basal and bolus rates when switching from MDI to pump, and also how to better adjust insulin dosing using CGM data.
During a workout which mocked actual patient daily decision-making, the supplier crowd did not fare too well with the last task; they were too reluctant to reevaluate formula recommendations to adjust for rapidly changing blood glucose (BG) levels and other real-life factors. When similar situations were introduced from the individual workshop, the discussion quickly grew more complex as people shared a number of practical, real-life suggestions (aka diabetes life hacks) and requested questions that were elaborate.
This wasn’t a major surprise — as no level of clinical understanding can substitute for real life experience gained from handling diabetes 24/7 and also learning to account for the myriad of variables that influence BG. PWDs are the pros. (I suppose we could bestow a title of super-experts on Drs. Edelman and Pettus, as two endocrinologists also residing with T1D.)
My personal highlight in the workshop proved to be a candid discussion about alcohol and diabetes (see Dr. Pettus article on this). My daughter is only 10, so it is too premature to broach this topic with her. Nevertheless, this will be great info to have when she hits her mid to late teens.
At the end of the day, I left with a stockpile of Glucolift organic sugar tabs; new strategies and tricks to improve our daughter’s diabetes control at home; a better knowledge of the challenges and challenges for both PWDs and HCPs; a feeling of gratitude for getting access to great doctors, sources, and encourage; and a renewed sense of excitement and hope about research and technology advancements. I also left with a feeling of ferocious pride about the sophisticated, bright, and resilient PWDs and fellow Type 3s I had the pleasure of spending my entire day with.
Due Polina. And thanks to this whole TCOYD team for making this experience possible!
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This content is made for Diabetes Mine, a consumer health blog focused on the diabetes community. The content is not medically reviewed and doesn’t stick to Healthline’s editorial instructions. For more information regarding Healthline’s venture with Diabetes Mine, please click here.
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