Advocacy in Action: JDRF 2019 Government Day


After nearly 500 meetings with Members of Congress, JDRF 2019 Government Day has officially come to a close. Over the course of four days, 175 grassroots leaders from across the country came to Washington, D.C. to advocate for the top issues affecting the type 1 diabetes (T1D) community. These issues, outlined in the JDRF 2019 Advocacy Agenda, include renewing the Special Diabetes Program (SDP), insulin affordability, healthcare principles, and strong funding for the National Institutes of Health (NIH) and Food and Drug Administration (FDA).

“This year, there is increased visibility on the issues facing the T1D community,” says Stefanie Sonico, National Chair, Grassroots Leadership Team. “We have the unique opportunity to advocate for priority issues, like the rising costs of insulin and renewing the Special Diabetes Program.we’re making sure these are priorities for our Members of Congress.”

Kicking Off the Special Diabetes Program Renewal Campaign

The campaign to renew the Special Diabetes Program is officially off and running. This groundbreaking program, which expires on September 30, 2019, directs $150 million to T1D research annually through NIH. Renewing this program is JDRF’s top legislative priority, and paramount to achieving our vision of a world without T1D.

While on Capitol Hill, JDRF Advocates called on their Members of Congress in the House and Senate to sign on to letters in support of the SDP– a critical first step in gaining support for its renewal.

“The SDP is responsible for incredible research,” says Randall Barker, Advocacy Team Chair for West Texas. “The one advancement I’m most excited about is the artificial pancreas, which my daughter has been lucky enough to use. Continued funding for this program will further advance more technology which will improve the lives of everyone with T1D–like my daughter.”

You can add your voice to the effort by asking your Members to sign these letters. Contact your Representative here and your Senators here.

The Cost of Insulin

Everyone with T1D should have access to insulin at a reasonable, predictable cost, and JDRF is committed to working with insulin manufacturers, health insurance providers, pharmacy benefit managers (PBMs) and employers to make this a reality.

JDRF believes that rebates are a key factor in the soaring costs of insulin. Eliminating them both in government programs, like Medicaid and Medicare, and in private insurance has the potential to lower the costs and make insulin more affordable for the millions who need it.

JDRF Advocates asked their Members of Congress to support both administrative and congressional actions that would eliminate rebates.

“I’m excited to be having the discussion around insulin affordability,” says Michelle Freedman, Grassroots Leadership Team member from Oregon. “Back home in our communities, we’ve been having this conversation with our families and friends for years. Having the opportunity to speak now with Congress is empowering, and we can make a difference.”

If you are struggling with the cost of insulin, JDRF has identified several programs that can help. Check them out here.

Agency Funding and Healthcare Principles

JDRF is the largest non-governmental funder of T1D research, but we can’t do it alone. Funding from the Federal Government is essential in achieving our mission. For years, the National Institutes of Health and U.S. Food & Drug Administration have played a pivotal role in delivering advancements that improve the lives of people with T1D. It is crucial that these agencies continue to be funded at a high level.

JDRF Advocates stressed the importance of this partnership and how critical this funding is to our continued success in years to come.

Additionally, JDRF Advocates reinforced our healthcare principles, which are key to people with T1D having access to affordable insurance that meets the needs of their T1D.

There’s More Work to Do

JDRF Government Day reminds us of the significant impact of grassroots advocacy, and the power we have when we speak as one. The legislation and policy that JDRF’s advocates championed will make a difference in the fight against T1D–but there is more work to be done, and we you can help.  

You don’t have a travel to Washington D.C. to have your voice heard by Federal lawmakers. Sign up to be an Advocate, and look out for emails and texts from JDRF Advocacy containing action alerts and simple ways for you to get involved and make a difference.

By Brian Herrick