JDRF Research Summit: The Who, What, When and Why of Type 1 Diabetes

As reported yesterday, the JDRF Capitol Chapter hosted their first annual research summit in Bethesda, MD, on Saturday. Just days before, the staff reported that they were expecting more than 400 people. Not bad!  The line-up included talks on the rise of type 1 diabetes, preventing type 1, the latest in artificial pancreas technology, and why human studies are crucial for the next steps in research.

I sat alongside several other D-bloggers, including Scott Strumello, Ginger Vieira, and Bennet Dunlap. Also on hand were med writer Miriam Tucker and Kevin, who’s most recognized for his contributions to diabetes logbooks. We had our very own table, sponsored by HealthCentral Network.

Below is my wrap-up of what we learned. NOTE: lots of links are included, because there’s of science at work here.


Dan Hurley, author of Diabetes Rising

The summit launched with a presentation by author Dan Hurley, a PWD with type 1, who has spent years researching the rise in type 1 diabetes. Originally, the theory was that some virus triggered the crazy immune response that causes type 1, but Dan says that idea “never really gelled.” Dan shared five hypotheses for why there is an increase in type 1, which include: the “hygiene hypothesis,” the “accelerator hypothesis,” lack of vitamin D, pollutants and infant formula.

The “hygiene hypothesis” essentially says that “nothing causes type 1 diabetes” — as in, the cleanliness of the developed world and the lack of infections for T-cells to fight causes the immune system to go crazy because it “gets bored.” The “accelerator hypothesis” supposes that growth factors in the modern-day world put stress on the pancreas. Children nowadays grow much more and faster than they did in previous centuries, and this theory proposes that rapid body growth causes insulin resistance, and eventually also the death of the beta cells. Lack of vitamin D, pollutants and infant formula have all been discussed previously as theories for why type 1 diabetes is on the rise. At the blogger table, we discussed the simple explanation that cases of type 1 might appear to be on the rise simply because of higher survival rates (i.e. children aren’t dying from diabetes) and better medical reporting of new cases in recent years.

Dr. Henry Rodriguez, Medical Director, University of South Florida Diabetes Center

Given that this summit was mostly targeted toward D-parents, it was no surprise that a lot of attention was focused on the issues and challenges facing children with diabetes. These include:

- lack of a national health plan

- fragmentary nature of health care (lack of cohesion between providers — which we like to call “The Myth of the Healthcare Team“)

- inadequate mental health services

- limited healthcare literacy (people don’t know enough about their own illness or treatments for it)

- inconsistent care in schools

- lack of a national registry for people with diabetes (traditionally, there were no real stats for type 1 diabetes, although the Helmsley Trust is working to change all that!)

- persistence of DKA at diagnosis (DKA is deadly, showing that early detection of the disease is badly needed)

One project you may know of that the JDRF is working on is the T1D Exchange, which aims to enroll children with Type 1 diabetes across the country to get a sense for when they were diagnosed, how they manage and treat their diabetes, and get a sense of benefits for different treatment strategies.

[Dr. Ed Damiano was up next, but we interviewed him yesterday, so you can check out the video here.]

Mark Atkinson, Director of the Diabetes Center of Excellence at the University of Florida, Gainesville and Director of JDRF’s nPOD (pancreas donor) Project

Dr. Atkinson shared his view of 10 diabetes-related “pedagogical dogmas,” which are basically opinions that become accepted by authorities as cold, hard fact. One interesting dogma he debunked is the idea that after a few months, beta cells are all gone. In reality, that isn’t always the case. There are sometimes insulin-positive cells remaining, and there is an idea that these tiny amounts of insulin-producing cells can actually cause challenges to our diabetes management (!)  Another dogma is that NOD (non-obese diabetic) mice are effective tools for finding a cure. We all know that mice are always used for diabetes cure research, but did you know that diabetes has been cured in mice four hundred times? (And yet again this week!) Clearly, mice are doing squat for us people, and that is why, Dr. Atkinson says, we need more human trials.

Dr. Aaron Kowalski, VP of Therapeutic Therapies at JDRF

Dr. Kowalski and his brother both live with type 1 diabetes, and it’s always interesting to hear perspectives on research from those who know it best. The goal of the artificial pancreas is to eventually manage diabetes with minimal patient input, but Kowalski (and Damiano) explained that it’s going to come in phases. Right now, they are working to gain FDA approval for insulin pumps with auto shut-off systems, like the Minimed Veo, which is not approved in the US for “safety reasons.”  Dr. Kowalski also points out that a major flaw in our D-management toolbox is that current insulins work too slowly (although at least one Pharma company disagrees there). Plus, there are other hormones that are affected by diabetes: glucagon, amylin, and leptin. Therefore, all of our future management tools and the cure itself will have to account for a lot more than just fluctuating blood sugars, Kowalski says.

Dr. Jerry Palmer, University of Washington, Investigator in the Diamyd DiaPrevent GAD Study

There have been several different studies on preventing type 1 diabetes. Why do we care about prevention if we already have it? Well, the immune system response is still active even after diagnosis.  That means there’s hope for stopping the disease in its tracks, IF it is caught very early.  On the flipside, when a person receives an islet cell transplant, the disease is stopped for a while, but will eventually return.

Did you know that oral insulin has been studied as a possible prevention for diabetes? Although oral insulin is degraded in the immune system, in one study, those who took oral insulin delayed their development of type 1 diabetes by about five years, with some people experiencing a 10-year delay.

Things that definitely don’t work for prevention are: vitamin nicatinamide (vitamin B3) and parenternal insulin (injections of insulin prior to diagnosis). Oral insulin is still under investigation, as well as nasal insulin, new types of infant formulas, and omega-3 fatty acids. Other proposed options include probiotics, anti-CD3, and the GAD vaccine.

Unfortunately I missed the final session, presented by Bill Parsons, Legislative Director to Congressman Chris Van Hollen, due to my interview with Dr. Ed Damiano. Parsons presented “the view from Capitol Hill,” and I understand he talked about President Obama’s push for expanded stem cell research, a hotly debated topic. He talked about healthcare reform and research funding, and also reported that, “Obama is concerned about the pace of regulation in the USA.”

At the end of the day, there was a Q & A with all of the speakers. One comment I wanted to share was a response by Dr. Aaron Kowalski to the question about when there might be a cure for type 1 diabetes, considering all the statements made by doctors and JDRF staff that a cure is “10 years away.” Dr. Kowalski said, “The idea of a cure has evolved. Islet research turned out to be a lot more challenging (than expected). We have to be more realistic, and (a cure) will be evolutionary. We won’t be able to just snap our fingers.” Well, that sure is clear.


In this video, my fellow bloggers also shared some of their feedback about the summit:

Big thanks to everyone involved!