The path to a cure for type 1 diabetes

Sen. Susan M. Collins

(R-Maine)

With its magnificent buildings, monuments, and memorials, Washington is a city of inspiring sights. Just as inspiring was the sea of blue t-shirts worn by the more than 160 young delegates to the Juvenile Diabetes Research Foundation’s 2015 Children’s Congress who participated in a recent Aging Committee hearing I chaired on how diabetes affects people of all ages and their families, and the importance of research to prevent, treat, and eventually cure this difficult and life-long disease.

This was the eighth consecutive Children’s Congress that I have chaired. As the founder of the Senate Diabetes Caucus, I have learned a lot about the difficulties and heartbreak that this disease causes for so many American families as they await a cure. Diabetes is a life-long condition that does not discriminate: it affects people of every age, race, and nationality.

Nearly 30 million Americans have diabetes and another 86 million have prediabetes. 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.

The statistics are overwhelming. But what really motivates me to devote so much energy to this issue is meeting people — like the Children’s Congress delegates and their families from every state and around the world — whose lives have been forever changed by diabetes. The burden of diabetes is particularly heavy for individuals with Type 1 diabetes. Usually diagnosed in childhood or adolescence, Type 1 diabetes is a disease that one can never outgrow. That is why it is so important that the delegates traveled to Washington to tell their stories and to put a human face on the statistics.

It was a great pleasure to get to know the inspiring young people from Maine who came to Washington to participate in the hearing: Isabelle Levesque of Arundel, Mark Hurlbert from Harrington, and Kate Hall from Casco. Isabelle and Kate testified before the Committee, as did a delegate from Missouri. At the other end of the age spectrum, we heard from a celebrated track coach from Rhode Island who has met and overcome the challenge of diabetes for 67 years.

Since I founded the Senate Diabetes Caucus in 1997, funding for diabetes research has more than tripled from $319 million to well over a billion dollars this year. As a consequence, we have seen some encouraging breakthroughs and are on the threshold of a number of new discoveries. Earlier this year, Congress passed legislation to extend for two years the Special Diabetes Program that provides an additional $150 million a year for type 1 diabetes research. Two of our witnesses were leading scientists who provided informative and encouraging updates on the latest research.

But the true stars of the day were the Children’s Congress delegates. Isabelle, age 10, was the first to testify. Since she was diagnosed with type 1 diabetes eight years ago, she has had to stick a needle into her skin – to test her blood sugar and to receive insulin – more than 30,000 times! She said she constantly has to put her life on hold to test her blood, whether at school, at the movies, or in the middle of a soccer or softball game.

While Isabelle called upon Washington to increase funding for diabetes research, she is more than doing her part. Her Walk for Diabetes team, Strides for Isabelle, has been the top fundraising team in Maine five of the last seven years and has raised more than $100,000.

It was a great pleasure to introduce Kate to the Committee, although she needs no introduction to sports fans throughout Maine. In June, as a graduating senior from Casco, Kate broke a 39-year-old national high school record in the long jump, with an astonishing jump of 22 feet, 5 inches.

Kate was diagnosed with Type 1 diabetes when she was 10. After being benched during her first soccer game after that diagnosis, Kate pledged that she would never allow the disease to stop her from doing what she loved. Although her diabetes requires constant and careful management, and has caused painful muscle cramps during practices and competition, she has kept that pledge.

Another hearing witness, Bob Amato was diagnosed with type 1 diabetes 67 years ago when he was seven years old, when the disease was considered a bar against an active, athletic life. He challenged this idea and became a successful runner and nationally recognized track coach. During his nearly seven decades of diabetes, he has benefitted from dramatic advancements in managing diabetes.

One particular advancement cited by all of our witness is the Continuous Glucose Monitor, a physician-prescribed, FDA-approved medical device that can provide real-time readings and data about trends in glucose levels. Individuals using a CGM have improved overall glucose control and reduced rates of hypoglycemia. While 95 percent of private insurers cover this potentially life-saving device, Medicare does not. Correcting this lack of coverage for America’s seniors is among my highest legislative priorities.

A theme of the recent hearing was a shared hope that one day a cure will be found for diabetes, and that type 1 will become “Type none.” With Washington’s support for the brilliant research being conducted and the courage and determination demonstrated by our witnesses, that goal can be reached.