Young Mainers won’t let diabetes end their dreams

6 years ago

With its magnificent buildings, monuments, and memorials, Washington is a city of inspiring sights. Just as inspiring was the sea of blue shirts worn by the more than 160 young delegates who participated in a recent hearing on how diabetes affects people of all ages and their families.

This was the ninth consecutive JDRF Children’s Congress that I have chaired. Our hearing focused on the importance of research to prevent, treat, and ultimately cure Type 1 diabetes. Usually diagnosed in childhood or adolescence, Type 1 diabetes is a lifelong disease that to date one can never outgrow. That is why it is so important that these young delegates to the Children’s Congress travel to Washington to tell their stories and put a human face on the statistics.

Diabetes does not discriminate: it affects people of every age, race, and nationality. The statistics are overwhelming. Nearly 30 million Americans have diabetes, including more than one million people who are living with Type 1.

In addition to the human toll, diabetes costs the United States an estimated $245 billion a year — a cost that is projected to more than double by the year 2020. It also accounts for one out of three Medicare dollars. In fact, medical costs for Americans with diabetes are more than double those incurred by individuals without diabetes.

Thankfully, there is good news for people with diabetes. Funding for diabetes research has more than tripled from $319 million in 1997 to more than a billion dollars this year. As a result, we have seen encouraging developments in the management, treatment and potential cures for Type 1 diabetes.

Moreover, earlier this year, Medicare adopted a policy I have long pushed for to provide coverage for an effective, lifesaving device — the continuous glucose monitor (CGM) — that is helping millions of Americans with diabetes who rely on the CGM to successfully manage the disease. Last year, the FDA approved an artificial pancreas system that will revolutionize diabetes care by automatically controlling blood glucose levels.  

One program in particular that has led to phenomenal discoveries is the National Institutes of Health’s Special Diabetes Program. This critical program, which led the development of the artificial pancreas, provides $150 million a year for Type 1 diabetes research, in addition to the regular NIH appropriation for diabetes research. The Special Diabetes Program is changing the future of diabetes.

It was a great pleasure to welcome the two Children’s Congress delegates from Maine: Charlie Albair of Gray and Brady Chappell of Naples. Charlie testified before the Committee, describing how advancements in technology — from insulin injections with syringes at first to a glucose pump and now a CGM — has made managing his diabetes so much easier.

“When I first found out I had diabetes, I remember thinking that this would change my whole life. I thought that I wouldn’t realize my dream of being a sports star. Now I realize I can do whatever I want,” he said.

Charlie urged senators to continue to support diabetes research, promising that “if you do, I will invite you to a game when I am on the Red Sox.”

In addition to hearing testimony from children, a parent and an NIH researcher, the Committee heard from actor Paul Sparks, best known for his role in “House of Cards,” who was diagnosed with Type 1 diabetes nearly 20 years ago at age 27. He described how in the early years he would have to sneak gulps of orange juice while on stage to maintain his blood glucose level. Today, with inhaled insulin and a CGM, he can manage his diabetes quickly, easily and safely. “This research has made a difference in my life,” he said. “It has made a difference in the lives of everyone in this room — and millions more.”

It is essential that Congress pass legislation this year to extend the Special Diabetes Program, which otherwise expires in September. This program is critical to our efforts to find better treatments, a means of prevention, and ultimately a cure for diabetes. By continuing and strengthening this investment, we will one day see a future in which those with Type 1 diabetes, like the courageous and determined Children’s Congress delegates, can look forward to a better and brighter tomorrow.