Polina Bryson is a healthcare professional and D-mom in California, whose school-age daughter lives with type 1 diabetes and celiac disease. She's become passionate on both fronts about keeping up with the latest research and technologies for T1D, and today brings us this report 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) conference in San Diego. As many of you know, TCOYD is a nonprofit organization that provides patient and provider diabetes education throughout the country. It was founded by prominent San Diego endocrinologist Steven Edelman, who himself was diagnosed with type 1 diabetes at age 15. TCOYD has provider and patient presentations happening at the same time, so I went in wearing two hats. Being a clinical psychologist by trade, and a so-called Type 3 by virtue of having a 10-year-old daughter with type 1 diabetes, I decided to split my time between the provider and patient workshops, focusing mainly on the T1D track. Even though this was my third time at the conference and second year attending both types of presentations, I still learned a great deal. Below is a summary of my main 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 is now Medical Director at Insulet) – provided an excellent overview of “the latest and greatest” research developments. When Dr. Pettus noted that when he started presenting research at TCOYD a few years ago, he was concerned about not having enough to discuss. Nowadays, there is not enough time to cover the latest developments! Absence of a cure in the foreseeable future notwithstanding, new research is exciting and promising.
Beta cell encapsulation clinical trials in humans are underway since last year, with efficacy results expected around 2020. Recent attention has focused on the connection between gut bacteria and diabetes, which may aid in developing prevention and early detection strategies. Another area of research focuses on slowing the progression of diabetes and preserving beta cells in newly diagnosed patients. And of course, artificial/bionic pancreas trials (now being conducted in real-world settings!) are moving full speed ahead. This is just a small sampling of current research studies. There is a lot of evidence-based hope that in the next 3-4 years the artificial pancreas technology will provide the bridge to a T1D cure.
Currently Available Technologies and Treatments are Underutilized
Dr. Edelman mentioned that about 75% of people with T1D are still on multiple daily injections (MDI), and the vast majority are not using continuous glucose monitoring technology (CGM). I may live in a bubble, but these numbers were
shocking to me. We got our daughter on a pump and CGM soon after her diagnosis, and we’ve surrounded ourselves with people, both online and in real life, who are up to date on and eager to try the latest technology. In my experience and opinion, it makes our lives easier and our daughter’s diabetes management more effective and safer.
When it comes to type 2 diabetes (T2D), the issues are similar. Many oral agents are available but few are fully taken advantage of. Few individuals with T2D are on insulin or a pump, even though many more might benefit from those therapies.
Reasons for this underutilization include a broken healthcare system that denies people access to treatments and medications, poorly informed healthcare providers, and the societal stigma and shame about diabetes that often gets in the way of people taking the medications they need. We have a long way to go to remove the barriers to treatments that people with diabetes frequently face.
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 health care providers (HCPs) openly aired their grievances and then discussed what works. Interestingly, PWDs and HCPs expressed common themes of what drives them crazy about the other side. Both groups expressed feeling disrespected.
PWDs spoke about their experiences of not being listened to, being blamed and shamed, and not given enough time or attention to address their concerns. HCPs vented about patients who refuse to follow recommendations, lie about taking their medication, 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 best efforts. HCPs expressed how they are expected to provide quick and easy fixes that do not exist. Lastly, both sides expressed a great deal of burnout and stress.
What works? Ultimately it boils down to clear communication and collaborative teamwork between PWDs and HCPs. When both sides treat each other with respect, listen to one another, discuss their concerns with honesty and sensitivity, and work together on mutually agreed goals, everyone wins.
Sometimes Patients Know Best
It was eye-opening to sit through the Clinical Management of T1D Workshop for Providers, facilitated by Dr. Edelman, and then attend a similar workshop for patients, facilitated by Drs. Edelman and Pettus. The provider information was
rather basic: pros and cons of pump therapy and different pumps available, benefits of CGM, how to calculate basal and bolus rates when switching from MDI to pump, and how to better adjust insulin dosing using CGM data.
During an exercise that mocked real patient day-to-day decision-making, the provider crowd did not fare too well with the last task; they were too reluctant to override formula recommendations to adjust for rapidly changing blood glucose (BG) levels and other real-life factors. When similar scenarios were presented in the patient workshop, the discussion quickly grew more complex as people shared a number of practical, real-life suggestions (aka diabetes life hacks) and asked intricate questions.
This wasn’t a big surprise -- as no amount of clinical knowledge can substitute for real-life experience gained from managing diabetes 24/7 and learning to account for the myriad of factors that affect BG. PWDs are the true experts. (I suppose we can bestow a title of super-experts on Drs. Edelman and Pettus, as two endocrinologists also living with T1D.)
My personal highlight from the workshop was a candid discussion about alcohol and diabetes (see Dr. Pettus post on that here). My daughter is only 10, so it’s too early to broach this subject with her. However, this will be great information to have when she hits her mid to late teens.
At the end of the day, I left with a stockpile of Glucolift all-natural glucose tabs; new tips and tricks to improve our daughter’s diabetes management at home; a better understanding of the barriers and frustrations for both PWDs and HCPs; a feeling of gratitude for having access to great doctors, resources, and support; and a renewed sense of hope and excitement about research and technology developments. I also left with a feeling of fierce pride about the sophisticated, bright, and resilient PWDs and fellow Type 3s I had the pleasure of spending my day with.
Thanks Polina. And thanks to the whole TCOYD crew for making this experience possible!