LIVE from the JDRF Research Summit 2011
DUE TO TECHNICAL DIFFICULTIES, GINGER's BLOG WILL BE POSTED HERE:
I'm Ginger Vieira, Type 1 diabetic, celiac disease, record-setting powerlifter and health coach/advocate from www.Living-in-Progress.com.
I'm here at the JDRF Research Summit of 2011 in Bethesda, MD. I'll be blogging live throughout the day as some of the world's leading experts in diabetes research. These are notes and excerpts from their presentations.
10:15 a.m. - Dan Hurley - Author of "Diabetes Rising"
Diagnosed when he as 18, with Type 1 diabetes, he didn't meet anyone else living with Type 1 until the early 80s. "I was testing all the time, recording what I ate, and that was kind of new thing, people weren't doing that," Dan explained. But when he met this other person living with the disease, he said, "'Oh I'd rather die than do that,'...and 5 years later, that is what happened."
"When I started work on this book, I found a news article about some people in Weston, MA, a ritzy suburb. They were concerned because they had 7 cases of Type 1 in this small neighborhood. Then 10, then 18 cases. One of whom was the son of Ray Allen of the Celtics."
Dan began researching and found a report from 1890 about children dying from diabetes, but the number of children with diabetes was 1.3 for every 100,000 children. Very rare. This number has gradually increased since then.
"In the mid 80s it was already 10 times more common."
It is now 26.3 per every 100,000 people.
"It is now 18 times more common than it was 100 years ago."
There are 5 hypothesis -- each with decent evidence.
1. Hygiene Hypothesis: literally NOTHING is causing this increase in Type 1. Your immune system is deigned to fight invaders, when they're aren't enough invaders, your immune system gets "grumpy" and decides to attack your pancreas, "because it's bored."
2. Excelerator Hypothesis: weight, faster growth puts more pressure on the immune system, makes the immune system unhappy and puts the pancreas under stress, causing it to "crank out more insulin," the immune system seem the stress of the pancreas and attacks. This theory comes from Terry Wilkin. This theory upsets many people in the community!
3. Vitamin D Hypothesis: people living in less sunny areas of the world have higher rates of Type 1 diabetes. Less sunshine = less vitamin D = leads to "strange problems" could have an effect on the development Type 1 diabetes.
4. Pollutants Hypothesis: In Woburn, MA, there have been 7 kids in one school with Type 1 diabetes. Woburn is the town from the movie, "A Civil Action" in which pollutants in the town's water possibly led to high rates of Luekemia. The evidence in this hypothesis is the weakest, but it's being researched.
5. Infant Forumla Hypothesis: Two researchers from Finland are studying high-protein diet's increase in Type 1 diabetes. They looked closer into cow's milk and infant formula. Their study showed that high levels of the antibody of the protein in cow's milk is strongly associated with Type 1 diabetes. Another researcher ran the same test, and could not find similar evidence. A study called, "Trigger" with several thousand kids in the USA, had their parents agree to half of which feeding their children normal formula from cow's milk, the other half gave highly-hydrolized formula. The second group had a much lower rate of Type 1 diabetes. The study is still continuing.
NONE of these hypothesis have been proven beyond doubt. As Dan points out, even cold medicine hasn't proven to treat colds, and we still continue to buy it and use it. We've got to continue to pursue the cause of the rise in Type 1 diabetes.
Dan's final question: "Why don't we know exactly how many people have Type 1 diabetes?" There is something called mandated case-reporting that is sent to the public health report. "This doesn't yet exist for Type 1 diabetes. It should exist."
10:45 a.m. - Henry Rodriguez MD
-Approximately 479,000 children aged 0-14 have Type 1 diabetes.
-Increasing about 3% per year.
-75,000 new diagnosis per year.
-Finland = 40 / 100,000 people (2,100 people)
-China = .1 / 100,000 people (13,000 people)
-North America an Australia have highest rates.
-Southeast Asia has highest number of children with Type 1 diabetes.
-26 million Americans have diabetes (Type 1/ Type 2)
-Numbers projected to double or triple by 2050
-Predicting 1/3 people having diabetes over the next 40 years.
"SEARCH STUDY" for Diabetes in Youth - where is diabetes in children?
-15,000 kids diagnosed annually
-non-hispanic had highest rate of Type 1 in contrast to Type 2
Challenges to US Children with Diabetes
-lack of national health plan
-fragmentary nature of healthcare
-inadequate mental health resources
-limited healthcare literacy
-inconsistent care in schools
-lack of national/state diabetes registry
-persistence of DKA at diagnosis
Clinical Studies from the industry
MacroGenic / Lilly Protege
Tolerx/Glaxo Smith Kline
T1D Exchange Project: enrolling as many children with Type 1 diabetes across the country as possible to get a sense for when they were diagnosed, how they manage and treat their diabetes, and get a better sense of benefits of different treatment strategies.
JDRF "T1D Aware" Campaign
-Pilot program to raise awareness of the signs and symptoms of diabetes so a diagnosis can be made before a person reaches a severe DKA state.
11:00 a.m. - Edward Damiano - Bionic Endocrine Pancreas
Edward's son was 11 months old when he was diagnosed with Type 1 diabetes.
The artificial endocrine pancreas: a "closed-loop blood sugar management system."
"I've always been a little uncomfortable with that title. It says what it isn't: it isn't a real pancreas. But it's gonna be darn good, and a lot better than hormone therapy."
This technology uses both insulin and glucagon, making automated decisions for your body to regulate your blood sugar levels.
-dual chamber or dual patch pump to deliver insulin and glucagon
-with an embedded integrated circuit containing a control algorithm for blood glucose regulation.
-and a continuous glucose monitor that telemetrically reads and reports levels
This requires only the subject's weight for initialization, and adapts online to subject. Online operation is solely based on glucose, no feed-forward information necessary.
Blood sugars averaged 118 mg/dL in this closed-loop system.
11:45 a.m. - Mark Atkinson, PhD - How Type 1 Diabetes Develops
Involved with Type 1 diabetes research for 25 years, involved with the JDRF, ADA, NIH and current research contributes to the development of Type 1 diabetes.
10 different "dogmas" -- "When you're diagnosed with diabetes you're told this and that, and those reasons become 'dogma.'" Something held as an established opinion.
In research, "pedagogical dogma," which is a point of view put forth that might not be fully accurate. This is common in Type 1 diabetes.
DOGMA: The destruction of beta cells (responsible for insulin production) is over %90, and "that is why diabetes develops." This theory is from a study in 1965, but the truth of the matter is that some people develop Type 1 diabetes even with only a 50 or 60 percent loss of beta cells.
Other factors: insulitis, loss of beta cells, age, weight, BMI, cell regeneration, etc.
DOGMA: YOu developed diabetes, you only have a few beta cells left, eventually there will be none left. But this has not proven to be true, and people who have lived with Type 1 for decades still have some insulin-producing cells.
78 year old individual, diagnosed at age 4, he is still has auto-antibodies and immune response against those insulin producing cells. There are still insulin producing cells found in his body. In some people, it's true that they have no beta-cells left, but it's not true for everyone.
DOGMA: "Obesity is driving the increase in Type 1 diabetes." There is a reason why this is going up, but the real increase is occurring in seemingly healthy YOUNG PEOPLE, NOT the ever-growing population of obese people.
DOGMA: Type 1 diabetes is always the same in everyone. Actually, you can develop Type 1 diabetes at any age, even as old as your 80s. Some cases the patient doesn't have any beta-cells, while another still may have many.
DOGMA: The immune response occurs right before the onset of the disease. The reality is that the same immune system that led to diabetes is present years and decades later when you have a transplant, for example. The auto-immune response is very efficient and that is why pancreatic transplants are challenging because your body responds to that foreign pancreas the same way it attacked your own pancreas when you were diagnosed with diabetes.
nPOD is a program collecting Pancreatic Organ Donors with Diabetes for further research. (www.jdrf.nPOD.org)
DOGMA: Mice serve has an effective means for finding a cure for Type 1 diabetes. While there are 400 ways you can prevent diabetes in mice...but these have not proven effective in humans! While mice are helpful, it is not equal to testing on humans.
DOGMA: We know a lot about diabetes because there have been several hundred thousand mice with diabetes studied. Reality: There are several hundred thousand more studies on mice than there have ever been on humans!We need more studies on HUMANS! More human research in order to move forward.
"Please know that there are a series of researchers working diligently around the world trying to make a difference for this disease."
1:00 p.m. - Aaron Kowalski, PhD - The Artificial Pancreas Project: Closing the Loop.
(I was playing games with the children's group during this presentation!)
1:30 p.m. - Jerry Palmer MD - Is it possible to prevent Type 1 diabetes?
We do think that Type 1 diabetes begins with a genetic disposition but we do think that some thing in the environment is what causes the body to begin the development of the disease.
TWO STUDIES on people with new onset of Type 1 diabetes: gave groups treatment that destroys immune system and then gave them back stem cells to restore immune system. Side effects: fever, nausea, vomiting, hair loss, rash.
20/23 people came OFF supplemental insulin.
Why? Possibly because they were able to secrete more insulin.
"Hematopoetic Stem Cell Transplantation"
"Modulating the immune system might be important. We're not there yet!"
ORAL INSULIN: Swallowed insulin is degraded, but it still stimulates the immune system. In study, half took oral insulin, half took placebo, there was no difference in the development of Type 1 diabetes. However, there was a 4.5 -5 year delay in their development of Type 1 diabetes. Some patients had a 10 year delay.
This study will be repeated with stricter rules now that the researchers have a better idea of what to expect.
Diamyd is working on several Diabetes Prevention Studies.
WHERE ARE WE CURRENTLY IN PREVENTION FOR HUMANS?
Does NOT work: 1. Vitamin nicatinamide. Parenteral insulin.
Maybe: Oral insuln.
Ongoing: oral insulin, nasal insulin, infant formula, omega-3 fatty acids
PROPOSED: probiotics, anti-CD3, GAD Vaccine
Future prevention: "We can identify people at birth who are at high risk. We can then monitor those people for the onset and progression of their auto-immunity, and then we'll intervene. We'll intervene at various steps and check to see how successful we've been at intervening."
2:00 p.m. - Bill Parsons - A View from Capitol Hill/JDRF Capitol Board Member - Father to 7 year old with Type 1 diabetes
STEM CELL RESEARCH: In 2001, President Bush made room for stem cell research, legislation to expand it has been vetoed. President Obama has been working to expand stem cell research but it was challenged in court. It was appealed. JDRF joined coalition for advancement of medical research. Arguments and debate has been made, results could be announced any day now. In the next 6 months now, possibly sooner, we could have clarity from the circuit court on how this will be ruled. The supreme court will have the option in the end whether or not to hear the cases. The last resort will be to go to congress and fight for the law to be made.
This debate will have to play out over time.
"We want speed, treatments, cures...but on the other hand, we want safety."
Obama is concerned about the pace of regulation in the USA.
Parsons also spoke on healthcare reform, and research funding.