On Saturday January 29th 2011, I had the privilege of moderating an extraordinary program – (get ready for the long name) 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 1 learnings and musing (check out part 2 learnings and musings):
- Dan Hurley, author, journalist and person with type 1 (T1) since his youth, kicked off the program. He offered a fascinating account of the working hypotheses on the why and how T1 develops for his book Diabetes Rising: How a rare disease became a modern pandemic and what to do about it. He spoke of the alarming increase in T1 over the years: from ~1.3 in 100,000 prior to mid 1980s to 23.6 in 100,000, recently. He then marched through several hypotheses for this increase. From the Hygiene Hypothesis, described by Dan as related to our currently bored immune system and lack of intestinal parasites, to the hypothesis about a decrease in Vitamin D with research that shows there’s a higher incidence of T1 the further away from the equator one resides….and kids in general are spending more time indoors…away from the sunshine vitamin. Another hypothesis, which Dr. Jerry Palmer discussed later in the day (see Part 2), is being researched in the TRIGR study. It's looking at the negative effects of early introduction of cow’s milk formula to infants. Mr. Hurley closed his remarks by encouraging people to advocate with their state legislators to get a mandated case reporting system for T1. He said we don’t currently have a good way to track T1 cases.
- Henry Rodriguez, MD, a pediatric endocrinologist from University of South Florida (fairly recently relocated there after being in Indiana for a while) discussed the challenges and opportunities of raising a child with type 1 today. He focused on numbers and reality vs. the challenging emotional aspects (as I thought he would). A few challenges: transitioning children from their pediatric provider to an adult healthcare provider and from high school often to college and away from home. He mentioned a resource from our NIH/CDC National Diabetes Education Program: yourdiabetesinfo.org/transitions. He discussed inadequate mental health coverage for kids in which the risk for and diagnosis of depression is higher (just by virtue of having T1). He noted the need for more consistent care in schools. From this talk, and other conversations I had through the day, my eyes were opened to the reality that still today about a quarter (25% of kids) are in DKA (diabetic ketoacidosis) when they are diagnosed. Unfortunately we’re still seeing kids die in DKA prior to getting an appropriate diagnosis and medical care. Simply unacceptable! To change this statistic JDRF has initiated T1D Aware Campaign being piloted in 7 markets to raise awareness of DKA. Rodriguez detailed the lack of pediatric endocrinologist (~800) in the entire U.S. (and it’s not a growing field). He discussed initiatives integrated into the recently passed healthcare reform regulations which may be helpful in T1: Cures Accelerator Network and Catalyst to Better Diabetes Care. He mentioned many active studies: from the NIH sponsored TEDDY studying environmental factors, to TrialNet looking at high risk pre-diagnosis and early interventions, to the HEALTHY study middle school student with type 2. He discussed industry sponsored early intervention studies to delay type 1 progression and noted that the Macrogenics study with monoclonal antibodies has been cancelled due to no benefit (but the Tolerex and Diamyd studies continue).
- Todd Zion, PhD, President and CEO of SmartCells was not present, but I was provided with a statement from Zion to read. He addressed the recent sale of SmartCells to Merck. SmartInsulin is a technology that would allow people with diabetes who require insulin to take just one shot a day. Very amazing! It's designed to respond to the body’s varying glucose level. When glucose is high and insulin is needed, SmartInsulin would put out insulin available from the shot given that day. That’s way smarter than insulin available today! Zion stated, “Merck's resources combined with their strong commitment to SmartInsulin will enable a stronger research, manufacturing, clinical, regulatory, and marketing effort than SmartCells' could have dreamed of just a year ago.” He encouraged people to look for upcoming human clinical trials.
- Ed Damiano, PhD, Assistant Professor of Biomedical Engineering at Boston University and a Dad of an 11 year old with type 1 gave an impressive talk on his labs march towards a real life artificial pancreas (AP) also known as a closed loop pump system. He walked us through current short term human studies (which followed early preclinical pig research) to what longer term studies are on the horizon which recreate more real life scenarios their 5 day and 6 week studies. Their model uses a control algorithm based on glucose results to infuse both insulin and glucagon via two different Insulet pods (OmniPod) along with a CGM. He mentioned interesting learnings for managing type 1 now (I’d love to know more): They use a pre-meal priming bolus to help control that post meal rise of glucose. They’ve found that people need a good bit more bolus than basal insulin (he mentioned ~80% bolus vs. our often discussed 50%). (Alert: this following comment is really important.) He mentioned 50% variation of insulin action within the same person and between people and noted that this is part of the autoimmune disease (no wonder BG is so hard to control). His team is moving forward on an already FDA approved 5 day study in which they’re going to get people more mobile including some exercise, use an iphone platform with software to direct dosing decisions. A
I invite you to read Type 1 Diabetes Research Summit Recap – Cutting Edge Concepts, Forward Thinking Leaders: Part 2, to get the recap from other leading experts. Thanks again to JDRF Capitol Chapter for giving me the opportunity to moderate.