Children’s Congress Shaped Perspectives of Type 1 Diabetes and the Need to do More

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Our JDRF Children’s Congress Delegates have left Washington, DC. But they’ve made a lasting impression and paved a solid path forward to more success for the type 1 diabetes community.

“Thank you so much for coming,” said Susan Collins (R-ME), Chairwoman of the U.S. Senate Special Committee on Aging, and Ranking Member.

“Your personal stories really matter. They motivate Senators to get involved in the cause,” she told a Senate hearing room packed with blue Children’s Congress t-shirts. “Your passion and hope for a cure are contagious.”


Overview
More than 160 youth delegates from all 50 states and six countries gathered in the nation’s capital earlier this week for the JDRF Children’s Congress, a bi-annual event to urge continued research funding for type 1 diabetes (T1D).

The delegates, all living with T1D — ages four to 17 — traveled to Washington for the July 8 – July 10 gathering, which was led by Children’s Congress Chair Katama Eastman and her family from New York. Katama’s daughter Merrill was diagnosed with T1D when she was 15 months old. The family, active JDRF volunteers and advocates, host an active walk team, attend JDRF galas and are donors to the JDRF T1D Fund.

Celebrity T1D role models attended the entire event, sharing powerful experiences of living with T1D with both delegates and with Congressional representatives.

“They are inspiring people, showing that we can all follow our dreams, like they did,” said 10-year-old Tyler Carcelli of Cleveland.

Children’s Congress ended with a critical and emotion-filled Senate hearing on Capitol Hill for the Special Diabetes Program (SDP), which has provided $150 million annually toward T1D research and is essential to JDRF’s mission to create a world without T1D. The program began in 1997 and has contributed nearly $2.8 billion toward T1D research.

#1 Goal: Renew the SDP
The youth delegates and their families shared personal scrapbooks and experiences of life with T1D in 241 meetings with Congressional representatives. The delegates shared a unified message: we need a five-year renewal of SDP because the funding is changing and saving lives. So far, 68 Senators and 378 Representatives have signed letters of support for SDP, and a five-year renewal is contained in two pieces of proposed legislation — Senate Bill 1895 and House Bill 2668.

“The Special Diabetes Program is making a tremendous difference in our lives and in our hopes for the future,” JDRF President and CEO Aaron J. Kowalski, PhD., said at the Senate hearing, hosted by the Special Committee on Aging and led by Committee Chairman Susan Collins (R-ME) and Ranking Member Bob Casey (D-PA).

Dr. Kowalski testified that strong bipartisan support for SDP has led to numerous research breakthroughs, transforming the lives of people with T1D and bringing “us closer to our ultimate goal of curing this disease.”

Affordability
The delegates also urged Representatives and Senators to make insulin more affordable, highlighting that in Pennsylvania, the cost of insulin is fully covered as a life-sustaining medicine by Medicaid.

They also urged the elimination of rebates, which make up approximately 70% of insulin costs.

The delegates, advocating for the entire T1D community, also sought support from congressional representatives for:

  • Strong annual funding for the National Institutes of Health (NIH) and the Food and Drug Administration (FDA).
  •  JDRF’s Principles for Healthcare Reform
       o Access to high quality, affordable health insurance
       o Preserving protections for pre-existing conditions, like T1d
       o Allowing kids to remain on their parents’ health plans until age 26
       o Prohibiting yearly and lifetime dollar limits for essential health benefits

The Senate Hearing
Powerful testimony about the day-to-day challenges of living with T1D was the highlight of the Senate hearing, “Redefining Reality: How the Special Diabetes Program Is Changing the Lives of Americans with Type 1 Diabetes.”

The hearing featured the testimonies of actor Victor Garber, who was diagnosed with T1D at age 11; youth delegates, Ruby Anderson, 9 of Yarmouth, Maine, and Adriana Richard, 16, of Milton, Pennsylvania; Griffin Rodgers, director National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK); and Dr. Kowalski, PhD, JDRF President and CEO.

“Thanks in large part to the Special Diabetes Program, living with Type 1 Diabetes today is very different than back when I was a teenager,” Garber said.

JDRF Meets with the FDA
In addition to meeting with Congress, three teenage delegates with experience in T1D clinical trials traveled with JDRF leadership to Silver Spring, Maryland, to meet with Food and Drug Administration (FDA) officials. The FDA plays a critical role in the regulatory process by reviewing and approving new clinical trials and therapies. The JDRF delegation thanked the FDA for its partnership and dedication to continued innovation that can improve lives today while research works on cures for tomorrow.

T1D Role Models
In addition to meeting with their members of Congress, the delegates also met an impressive panel of T1D role models. At a Town Hall, hosted by ESPN Reporter Adam Schefter, delegates asked the T1D role models about what their experiences living with T1D while also succeeding as an actor, NASCAR driver, scientist, and more. 

Catch up on what you missed
For full JDRF 2019 Children’s Congress Coverage, check out the links below:

The Work Continues
Our work at JDRF is not over. JDRF needs your help to build on the progress made at Children’s Congress. Sign up to become an advocate today, respond to alerts, and ask your friends to share in our mission and advocate for all people with T1D.

JDRF 2019 Children’s Congress was supported in part by:

Premier Sponsor – Novo Nordisk
Supporting Sponsors – Delta Tau Delta, Merck, PhrMA
Elite Partners – Ford, Marshall’s

By Brian Herrick