News stories on type 1 diabetes prevention research tend to focus on new discoveries, promising studies and other generally positive developments. But now and then, it’s important to acknowledge setbacks in efforts to roll back the scourge of this disease.
Since 1994, a gigantic international study called Type 1 Diabetes TrialNet has screened over 160,000 participants — many of them children — for their diabetes risk at over 200 locations around the world. The study enrolls family members of people with type 1 diabetes who don’t have the disease, and looks at whether they have autoantibodies (immune system proteins) in their blood that predict developing the disease in the future.
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As an NPR article on the scaling back of the study notes, previously, children as young as 1 year old could be screened for five autoantibodies. Having at least two of these antibodies has been shown to drastically increase a person’s risk of later developing type 1 diabetes. If a child tested negative for all five antibodies, he or she could be rescreened annually until age 18.
But in March 2019, TrialNet received funding cuts from one of its main backers, the National Institute of Diabetes and Digestive and Kidney Diseases (part of the National Institutes of Health, or NIH). Under new eligibility rules, screening can now begin at 2.5 years old, and children who test negative for all antibodies won’t be rescreened at all.
The new guidelines come despite TrialNet’s own findings, published in 2011, that the most cost-effective way to screen for type 1 diabetes — by preventing emergency hospitalization when children develop it — is to annually screen all children under age 10 whose parents have the disease, and to screen everyone again at adolescence. If a child is shown to have at least two of the predictive antibodies at any point, they can receive further monitoring to look for signs of actually developing diabetes.
Now, though, many children who test negative for all five autoantibodies are likely to fall through the cracks, since they won’t be rescreened, and some of them will eventually develop at least two antibodies — and, later, type 1 diabetes itself. They’ll be less prepared to look for the signs of diabetes and more likely to be hospitalized. This is made clear in the NPR article’s profile of a mom with type 1 diabetes whose son was enrolled in the study in 2015 at 18 months old, and had none of the five autoantibodies. A year later, he had two of the antibodies, and by age 4, he had all five.
It may be possible for some parents to find other ways to screen their children again if they initially test negative for the predictive antibodies. But no potential alternative to TrialNet is likely to be easily accessible or covered by insurance, since current clinical guidelines don’t recognize the preventive benefits of screening for type 1 diabetes risk.
A freelance health writer and editor based in Wisconsin, Phillips has a degree in government from Harvard University. He writes on a variety of topics, but is especially interested in the intersection of health and public policy.