On Saturday January 29th 2011, I had the privilege of moderating an extraordinary program – The 1st Annual JDRF Capitol Chapter Type 1 Diabetes Research Summit held in Bethesda, Maryland (at the foothills of National Institutes of Health). What a thrill to introduce these luminaries in type 1 diabetes research. Congrats to the volunteers who amassed these brilliant as well as gracious experts!

Here are my part 2 learnings and musing (check out part 1 learnings and musings):

• Mark Atkinson, MD, who has 25 years of diabetes research behind him and tremendous perspective, encouraged us to rethink a number of dogmas which are, “held as established opinion.” He noted, “T1 is awash in dogma.” Among them:1) within a few months a person has no beta cells left/residual insulin. He noted experts still see people 50, 75 years later with some islet cells and insulin production. 2) Obesity is driving the type 1 explosion. No way! He said the explosion of type 1 is unfortunately among children younger than 5 years old. 3) T1 is caused by an inciting event. While many have been hypothesized and there’s been much association research conducted, no one exposure has been proven. He noted, it’s probably a combination of inciting events. 4) T1 is one disease. He discussed multiple forms of type 1 – that it’s a group of diseases with some commonalities. (Several experts made this point and it makes sense when you observe the variety of courses of T1 and observe all the later in life onsets [LADA – latent autoimmune diabetes in adults] we’re seeing.) 5) The immune response is seen just after the diagnosis. No, he noted. Insulinitis persists long after the disease onset and he added this is one reason it’s been difficult to have long term success with pancreas transplants (I found this point very interesting). Atkinson ended by calling "2011 a year of promise". It’s a key year for results from several prevention trials. He made a point as well (and I couldn’t agree more) that we need to focus more energy on improving management strategies and life for people with type 1 now (see my conclusion). Atkinson is involved with a sad but valuable JDRF project called nPOD – Network for Pancreatic Organ Donors with Diabetes. He noted researchers are gaining valuable understandings from nPOD.

• Aaron Kowalski, PhD, Research Director for JDRF’s Artificial Pancreas Project and person with T1. Dr. Kowalski began his talk discussing his diabetes and his brothers. He then moved on to delve into the Artificial Pancreas (AP). He began discussing the JDRF sponsored Continuous Glucose Monitoring studies which showed significant benefits and also showed quite simply…”for the device to be beneficial, you’ve got to wear it.” He proudly noted, today over 90% of private insurance plans are covering CGM for type 1, “access is dramatically better.” He continued discussing the AP noting, “we’re teed up toward closed loop systems.” Looks like there will be a few different models that come out of the various labs nationally (Boston, UVA-Charlottesville, Yale, etc.) and internationally. He discussed several fixes on current pumps which could be accomplished now, but movement is slow at FDA: (this list is also detailed by Jeffrey Brewer, CEO of JDRF in his DiaTribe interview)  1) Pump would shut off automatically with a very low glucose level, 2) Hypominimizer could prevent 80% of nocturnal hypoglycemia, 3) Hyper/hypo minimizer could use high and low customized cut points to set alarms to encourage action by the person. He discussed the data on just using a closed loop at night (this is Hovorka’s research from Cambridge, England). He mentioned Dr. Damiano’s work (see Part 1) with the dual hormones insulin and glucagon. He noted the industry must be the ones to commercialize the AP. One big hurdle to all of this is that what we call “rapid-acting insulin” is hardly "rapid." We need faster acting insulins. He talked about a JDRF and BD project on microneedles – these needles would speed the action of insulin (fascinating). He raised awareness of the multi-hormonal nature of glucose control – it goes way beyond just insulin. Glucose control includes glucagon, amylin and more. He ended by mentioning SmartInsulin (see Part 1), calling it a tremendous development and a “molecular artificial pancreas.” Dr. Kowalski during the Q & A mentioned that FDA is working tirelessly and in conjunction with researchers to push towards approval of various AP models. He said there’s a dedicated team at FDA. Read a recent press release from JDRF on AP.

• Jerry Palmer, MD, Professor of Medicine, University of Washington and involved with several type 1 studies including TrialNet, TRIGR, Diamyd’s DiaPrevent study investigating the use of GAD (glutamic acid decarboxylase) to preserve insulin production in newly diagnosed type 1 diabetes. Dr. Palmer began by making an analogy between a horserace and a cure for type 1. He discussed several immunological treatments being pursued preserve beta cell function from using an initial chemotherapy blast to mobilize stem cells, to use of GAD, to anti CD3 or CD20 monoclonal antibodies. He noted there’s now good evidence that by modulating the immune system one can preserve beta cells. He went on to mention the use of oral insulin used to stimulate the immune system (vs. insulin’s usual role). He noted it’s important that we identify people at high risk and to monitor for onset/progression as well as to monitor people with T1 to use a variety of treatments at different stages to slow or stop progression of disease.

To finds from the Exhibit Hall: A couple of new-to-me items caught my eyes:

• MyCare Connect offers parents of kids the opportunity (at no cost) to connect online (and soon to be an iphone app) to assist with their diabetes management. The program allows parents to connect with their child during the day from school, allows school health personnel to connect with parents, allows parents to provide data and questions to healthcare providers. Immediate text messages and/or e-mails are delivered both ways. A valuable resource for tech savvy parents of type 1 kids. View the short video on their website which is a great explanation.

• Store-a-Tooth: Did you know teeth and their roots contain stem cells and they’re a potential source to treat type 1 diabetes. Store-a-Tooth is a business venture dedicated to allowing parents to collect and store their children’s baby teeth for possible future use to treat a disease they may encounter during their life. It’s a bit pricey, but worth knowing about and considering.

From my vantage point as a long time diabetes educator, I found this 1st Annual JDRF Capitol Chapter Type 1 Diabetes Research Summit fascinating, enlightening and sobering. 

• Fascinating: the content took me beyond my current knowledge base of type 1 research.

• Enlightening: I saw first-hand (in volumes) the intense wants and needs of parents and people with T1 for the ultimate “cure.” Yet I felt the experts were trying, in a very caring way, to encourage parents’ to focus their energies and efforts on optimal management now. Yes, a cure, or multiple possible cures, as they made the point, is the penultimate goal. But cures in the future won’t help people who have T1 today (I think this is such an important point). And to add to this I encourage you to read the interesting and moving blog Losing Faith in a Cure on www.diabetesmine.com by Allison Blass which included this same point made by Jeffrey Brewer, the new CEO of JDRF, in his recent interview in DiaTribe. Both worth the read!).

• Sobering: I looked into the eyes of many parents who deal with the challenges of managing a child with T1 or people with T1 24/7/365 – a very tough and emotionally draining job. Kudos to you for all you do for your children and yourselves!!

Remember to check out Type 1 Diabetes Research Summit Recap: Cutting Edge Concepts and Forward Thinking leaders: Part 1. Thanks again to JDRF Capitol Chapter for giving me the opportunity to moderate.