Rate of Kids with T1 Climbing Rapidly

Type 1 diabetes is no longer a “rare” disease, yet the news of higher T1 rates is greeted with a yawn. Where’s the outrage?



For once, Type 1 diabetes should be on the tip of everyone’s tongue.

A massive new study released in May 2014 has documented that the rate of Type 1 diabetes in U.S. children has increased by 21% over 8 years. That means we’re seeing a 2.8% to 4.0% rate increase in new T1 diagnoses annually. And for the first time, researchers are beginning to notice that the rate of new T1 diagnoses is increasing quicker in African-American and Hispanic communities, according to Dr. Richard Insel, chief scientific officer of the Juvenile Diabetes Research Foundation (JDRF).

“The data confirm what JDRF and many public health experts have long suspected: The incidence of Type 1 diabetes is on the rise in youth across all ethnic groups in the United States, and the disease is now having a more significant impact on black and Hispanic youth populations, which previously had relatively low rates of the disease,” Dr. Insel said in a statement.

This isn’t just a back-of-the-envelope estimate. Researchers have long suspected that T1 rates have been escalating, but hard data has been scarce. This study changes that; it collected health data of 3 million kids from across the country to create a comprehensive picture of rising T1 rates. More alarming, the researchers involved in the study have helplessly shrugged their shoulders as to why this is happening. With autism, for example, there’s always been the suspicion that autism diagnosis rates are rising in part because we’re getting better at recognizing the condition; there’s no similar argument to fall back on when it comes to Type 1 diabetes.

“In my career, Type 1 diabetes was a rare disease in children…and I’m not that old.” said Dr. Robin S. Goland, a co-director of the Naomi Berrie Diabetes Center at Columbia University Medical Center, in a New York Times article. “I don’t understand the basis for an increase.”

Yet despite this, we’re just not seeing the same level of awareness or call to action for diabetes cure research as we see for other common conditions, as a new video by the Diabetes Project points out. Breast cancer’s pink ribbon has become such a part of the landscape that if you see a pack of joggers in pink t-shirts you know the cause they support. Rising rates of autism have helped make the multi-colored puzzle piece of the autism awareness campaign ubiquitous on the backs of cars. But it’s a good bet that more Americans would recognize the black ribbon for the satirical “Support Zombies” campaign than the blue circle that symbolizes diabetes awareness.

This is a frustrating state of affairs, but the landscape is ripe for change. Policymakers are beginning to realize that the enormous health-care costs of diabetes represents an existential threat to the American economy, and they are eager to find solutions. The health care reform spirit awakened by the long debate over Obamacare has created a space for the diabetes community to have its moment. We are now armed with the data that we are not dealing with a “niche” disease.

To shape the dialogue, however, we might need to think more strategically. Some within the Type 1 diabetes community have chosen to distance themselves from people with Type 2, but together the Type 1 and Type 2 communities can combine to make a louder voice. Also, while it may be all too human an impulse to resent the attention that autism is getting over Type 1 diabetes, there may be a power in coupling the two causes, especially since it’s agreed that both conditions have an autoimmune component. Both movements also are filled with impassioned parents who understand the need for immediate action. There is a power in reaching across conditions to speak as one voice to demand action for our children and for ourselves.

The facts are before us, and it is up to us make something happen. The first thing to do is get involved; the second thing to do is to speak up early and often. We need to create such an awful din as we demand answers that everyone joins with us in thinking that the current state of affairs is unacceptable.

There are many diabetes organizations out there, each with its own focus, drive, and political perspective. While Insulin Nation doesn’t endorse one organization over another, here are some of the larger organizations to explore:

The American Diabetes Association: http://www.diabetes.org/
The Diabetes Hands Foundation: http://diabeteshandsfoundation.org/
The International Diabetes Foundation: http://www.idf.org/
The Juvenile Diabetes Cure Alliance: http://www.thejdca.org/
The Juvenile Diabetes Research Foundation: https://jdrf.org/

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Craig Idlebrook is a past editor for Insulin Nation, Type 2 Nation, and Información Sobre Diabetes. He is now the community engagement and content manager for T1D Exchange.