Importance of Type 1 Diabetes Research and the Special Diabetes Program Focus of Aging Committee Hearing

Click HERE to read Senator Collins’ opening statement

Click HERE to read Senator Casey’s opening statement

Washington, D.C.—Diabetes is a devastating, lifelong disease that affects people of every age, race, and nationality. Approximately 1.25 million Americans have Type 1 diabetes, including 200,000 youth.  An estimated 40,000 people in the U.S. are newly diagnosed each year. 

In an effort to raise awareness about Type 1 diabetes and emphasize the need for research, U.S. Senators Susan Collins (R-ME) and Bob Casey (D-PA), the Chairman and Ranking Member of the Senate Aging Committee, convened a hearing today titled, “Redefining Reality: How the Special Diabetes Program is Changing the Lives of Americans with Type 1 Diabetes.”

The hearing was held in conjunction with the JDRF Children’s Congress, a biennial event that began in 1999.

“Since the last convening of the Children’s Congress two years ago, we have made remarkable strides to change lives for Americans with Type 1 diabetes.  These advances have only been possible due to our bipartisan commitment to funding diabetes research, which has increased from $319 million when I founded the Senate Diabetes Caucus in 1997 to more than $1 billion last year,” said Senator Collins.  “We must keep our foot on the accelerator.  I am so proud of Maine’s two Children’s Congress delegates, Ruby Anderson of Yarmouth and Lydia Bryant of Ellsworth, for sharing their experience with Type 1 diabetes and advocating for the importance of continued research funding.”

“For the more than 1.25 million Americans living with Type 1 diabetes, the cost of managing their care can be financially overwhelming,” said Senator Casey. “I am pleased that the Senate took the first step to re-authorize the funding for the Special Diabetes Program, which helps fund research towards a cure, but until a cure is found we must ensure parents can afford life-sustaining insulin for their children. That’s why I introduced a bill today that would encourage states to expand Medicaid to children with disabilities, including Type 1 diabetes, regardless of their family’s income.”

“We are grateful to Senators Collins and Casey for leading today’s hearing on the importance of renewing the Special Diabetes Program,” said Aaron J. Kowalski, PhD, JDRF President and CEO. “They are true champions of the type 1 diabetes community, and we appreciate their support for research that could reduce the burden of this disease and ultimately help to achieve our vision of a world without type 1 diabetes.” 

The hearing focused on the impact of Type 1 diabetes on individuals and their families; recent advances and promising opportunities in Type 1 diabetes research; and the need to renew the Special Diabetes Program before September 30th in order to accelerate new treatments, more effective management technologies, and ultimately a cure.

Approximately 165 Children’s Congress delegates ages 4-17 from all fifty states, along with their families and other advocates, attended the hearing. Witnesses included researchers as well as those who are living with Type 1:

Griffin P. Rodgers, M.D., M.A.C.P., Director, National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK) from Bethesda, MD.  Dr. Rodgers discussed the critical role of the NIDDK in supporting diabetes research as well as advances made through the Special Diabetes Program, such as the artificial pancreas system.  NIDDK research has contributed to the development and testing of several continuous glucose monitors (CGM).  These include: the first CGM that does not require fingerstick calibration; the first fully interoperable CGM designed to be used as part of an integrated system with other compatible medical devices and electronic interfaces, which also does not require fingerstick calibration; and the first fully implantable CGM.  NIDDK also continues beta cell research, such as islet transplantation, to identify a cure.

Aaron Kowalski, PhD, President and CEO of JDRF from New York, NY. Dr. Kowalski is the first JDRF CEO to have Type 1 diabetes. He was diagnosed at age 13 following a similar diagnosis for his younger brother at the age of 3. Dr. Kowalski, an early advocate of CGMs and the artificial pancreas system, discussed the importance of NIDDK funding in conjunction with private investment. He also highlighted how advances in diabetes research are already reaping real results for the community.

Victor Garber, Actor from New York, NY.  Mr. Garber, who is known for roles in “Titanic,” “Alias,” and many other films and TV series, was diagnosed with Type 1 diabetes in 1962 at the age of 11.  When he turned 16, he moved to Toronto and had to manage his diabetes on his own. Mr. Garber explained how treating his Type 1 diabetes has improved over nearly six decades through advances in technology like the CGM.  He also conveyed his concerns about the skyrocketing price of insulin.  Senators Collins and Casey held a hearing on improving insulin access and affordability last year.

Ruby Anderson, Children’s Congress Delegate, age 9, from Yarmouth, ME.  Ruby was diagnosed with Type 1 in 2012 when she was just 23 months old.  She recently completed the third grade and has worked to raise awareness about diabetes at her school and in her community. She will discuss the impact of diabetes on her life and the hope ongoing research brings to her and to her family.

Adriana Richard, Children’s Congress Delegate, age 16, from Milton, PA.  Adriana, was diagnosed with Type 1 at age 5. She has previously been hospitalized due to low blood sugar and spoke about her how her continuous glucose monitor has made it easier to monitor and regularly test her glucose levels. Adriana volunteers with her local JDRF chapter, where she serves as a mentor to children and youth who are newly diagnosed with Type 1 diabetes. She also wrote a book, “The Real T1D,” about her experience growing up with this disease.

Click HERE to read their testimonies.