An Open Letter to the Diabetes Online Community: How You Can Help Prevent Type 1 Diabetes by Supporting Clinical Trials – Please Help Find More People to Test Teplizumab
By Kelly Close
by Kelly Close and Alasdair Wilkins
twitter summary: As a #diabetes community, we can be a part of learning how to prevent type 1 – ask, beg, persuade, & engage your relatives at risk to learn more about teplizumab
This year, it’s estimated that more than 15,000 children in the United States will be diagnosed with type 1 diabetes, adding to a number that already includes as many as 3 million people nationwide. What can be difficult for those of us with type 1 diabetes is the knowledge that we are more likely to know the people who comprise those other new diagnoses. Because genetic factors help determine the risk of type 1 diabetes, the odds are that some of the children and young adults who are diagnosed each year will be related to those who already have type 1. They can be our brothers and our sisters, our sons and our daughters, and even our cousins, nieces, and nephews. The Joslin Diabetes Center estimates that a person can be as much as 10 to 20 times more likely than the general population to develop type 1 diabetes if an immediate relative – a parent, a sibling, or a child – already has it, although the specific risk can vary considerably depending on a number of factors.
While the daily goal for people with type 1 is to manage diabetes as effectively as possible, the long-term hope is to ultimately to cure or prevent type 1 diabetes. The idea of prevention has been around a long time, and has been hard to prove. But having the potential to transform the lives of our relatives, who are at the greatest risk of developing type 1, is very real.
Right now, the best leads that researchers have in the search for a preventative treatment are the anti-CD3 antibodies, teplizumab and otelixizumab. These drugs in development are designed to block the immune cells from destroying the body’s insulin-producing beta cells and therefore prevent the onset of type 1 diabetes. In theory, these antibodies could slow down the initial progression of the disease or even, if administered early enough, halt the development of type 1 entirely. These are the long-term goals that we’d say are more than worth striving for. Can you imagine if YOUR diabetes could have been prevented? We know it can be a bit much to think about how to prevent type 1, when we already have it. The teplizumab trial is VERY big and is not going nearly as quickly as hoped - we as patients can make an enormous difference! Lean in, please, to talk to your relatives and find out if they are willing to help out these amazing researchers.
The only way to develop these treatments is through clinical trials. That’s why the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) is sponsoring a phase 2 trial for teplizumab in relatives of people with type 1. Over the next two years, the NIDDK’s goal is to enroll around 150 people between the ages of 8 and 45, all of whom should have a close relative with type 1 diabetes, at least two of the autoantibodies associated with the development of type 1, and some evidence of an impaired response to a glucose challenge. Potential volunteers can find out if they meet these criteria by being screened as part of the Pathway to Prevention Study, which has at least one center in 48 of the 50 states (all except Vermont and Wyoming) as well as the District of Columbia. There is even a convenient online screening at www.pathway2prevention.org!
So far, only 35 people have enrolled in the teplizumab study, in part because the study requires 14 consecutive days of 30-minute teplizumab infusions, followed by two hours of observation. In today’s crazy busy world, we know it’s virtually impossible to carve out that kind of time away from school or work. But… think about what you could be achieving for your loved one at risk of type 1 and all future people at risk for diabetes. You could be helping to PREVENT this disease.
What’s the other good news for the participants? The impact on your bottom line is good. Not only does the study pay (of course) for all lodging and transportation costs, it provides an additional $1,500 in compensation for participating in the trial. If you or a relative (your sibling, mom, dad – any first degree relative under age 45) lives in or within commuting distance of study centers in big cities like Denver, Indianapolis, Miami, Minneapolis, Nashville, New York, Pittsburgh, San Francisco, Seattle, and Toronto, please think long and hard about whether they could in fact participate in this vital study. For more information, please check out our recent trial watch. If you are eligible and interested in participating, please contact Dr. Jay Skyler at 305-243-6146 or [email protected] or Lisa Rafkin at 305-243-6146 and [email protected]. They would truly be elated.
It is critical that we as a diabetes community do what we can to benefit future generations and others who may be at risk for diabetes. The benefits of participation in trials aren’t at all abstract. As someone who has lived with type 1 diabetes for nearly 30 years, I have gained so much strength and resolve from taking part in studies that showed me what remarkable new treatments and devices were possible, and how much better things could be thanks to new research and new thinking. Granted, a therapy like teplizumab isn’t exactly around the corner; it’s likely still a ways off from realizing its true potential in the fight against type 1. But it’s up to us – and, in this case, our families – to make sure that teplizumab and other innovative therapies don’t remain forever out on the horizon, tantalizingly beyond our grasp. If we want to reach the day in which we can prevent and cure diabetes, we need to start walking toward it. I can’t guarantee that teplizumab or any other particular treatment represents the path to where we want to go. But I know that we’ll never get anywhere if we don’t take the first step. Thank you – thank you! – for listening.