The Importance of Becoming a Type 1 Diabetes Advocate


When it comes to type 1 diabetes (T1D) advocacy, there is power in numbers. Many of the rights, medications and technology used today are the result of hard-fought wins made possible by the tireless efforts of grassroots advocates working to ensure the T1D community is heard. 

Many people living with T1D want to become involved in advocacy to make a difference—but don’t know where to begin. Beyond Type 1 spoke with Jennie Costner, a highly engaged volunteer and member of the Grassroots Leadership Team at JDRF, about the importance of advocacy and how to become an advocate.

What does an advocate do?

Jennie has been advancing JDRF’s mission for two decades now, since 2003 when her then-10-year-old daughter Hannah was diagnosed with T1D. Not knowing anything about the condition, Jennie looked online for any resources to help her daughter and stumbled upon the JDRF website. 

Jennie loved the mission of JDRF—working to accelerate life-changing breakthroughs to cure, prevent and treat T1D and its complications. She loved that it was founded by parents of kids living with T1D. Eventually, she became a grassroots advocate for JDRF and over the years has encouraged others to join her as well.

Grassroots advocates are strategically positioned and activated to advance JDRF’s key issue areas—at present, those include renewal of the Special Diabetes Program (SDP) and improving access to affordable insulin for all who need it.

The SDP—established in 1997—has directed 3.4 billion dollars towards critical T1D research facilitated through the National Institutes of Health (NIH). This program has delivered many exciting breakthroughs in T1D research in the last 26 years, but the release of Tzield and the development of artificial pancreas systems are two of the most notable advances in recent years. 

“I can look at my daughter, and every diabetes device she wears was only possible due to research funding by the Special Diabetes Program (SDP)” says Jennie.

Through virtual and in-person campaigns, JDRF’s advocates regularly meet with their Members of Congress to build relationships, share what life with T1D is like and urge support for issues that are important to the T1D community. 

Just this spring, JDRF’s advocates pulled together to urge their Representatives and Senators to sign letters of support circulated by Diabetes Caucus leadership in the House and Senate to demonstrate their belief in the value of the SDP. After weeks of work, and multiple patient, yet persistent, touches from grassroots leaders to Congressional offices, 261 Representatives and 60 Senators from both parties signed on. 

This is a testament to the power of the T1D community!

How to become an advocate

Jennie is quick to assert that now is the perfect opportunity to join forces with JDRF and to become an advocate. Funding for the Special Diabetes Program (SDP) expires at the end of September and renewing it is critical. In fact, JDRF staff and advocates are urging Congress to renew this program at an increased amount of $170 million per year to accelerate our path to cures.

Also, there is more work to be done to improve access to affordable insulin. JDRF supports the INSULIN Act, which would cap the monthly cost of insulin at $35 on all commercial health plans and bring relief to the uninsured by addressing the systemic problems that have caused the rising cost of insulin to become a unique, American crisis. (JDRF recently published other important progress achieved on this front.)

Jennie says that becoming an advocate has changed her life—it gives her hope cures are around the corner because people who are passionate about finding them are getting on board, speaking out and urging Congress to increase research funding.

“It gives me hope for my daughter’s cure. You’re actively doing something about it—it’s a little silver lining to a diabetes diagnosis. I can empower others to find the cure.”

We need more voices at the table and becoming an advocate with JDRF is easy—join here to receive updates and make your voice heard!

Editor’s Note: This resource was created in partnership with JDRF, an active partner of Beyond Type 1 at the time of publication, through the JDRF – Beyond Type 1 Alliance.

WRITTEN BY Christine Fallabel, POSTED 09/21/23, UPDATED 09/27/23

Christine Fallabel has been living with type 1 diabetes since 2000. She's a health and science writer and has been featured in Diabetes Daily Grind, Insulin Nation, Diabetics Doing Things, and is a regular contributor to Diabetes Strong, T1D Exchange and Healthline. She earned her Master of Public Health from Temple University and received her Bachelor of Arts from The University of Delaware. In her spare time, she enjoys hiking with her husband in the mountains of Colorado, tinkering with her DIY Loop insulin pump, drinking strong coffee and reading in front of a cozy fire.