JDRF Advocates: The Voice of a Community

JDRF Advocates are volunteers who use their voices and personal stories to communicate the financial, medical, and emotional burdens of type 1 diabetes (T1D) to government, healthcare, and regulatory leaders. Advocates help advance policies and research funding to improve the lives of people with T1D today while laying the groundwork for the next generation of life-changing therapies and cures.

Joel Barnett’s advocacy work started after his daughter, Berkeley, was diagnosed with T1D almost 20 years ago. Since then, he has used his voice at the local and national levels to impact change and drive progress. He currently serves as an Advocacy Team Chair in Southern Texas.

Shelley Page got involved with JDRF after her daughter, Emma, was diagnosed with T1D 36 years ago. Shelley and her husband helped start JDRF’s Minnesota Chapter (in their basement laundry room!). She is currently the National Chair of the Grassroots Leadership Team.

We sat down with Joel and Shelley to learn more about their experiences as JDRF Advocates.

What inspired you to get involved with JDRF Advocacy?

Joel: I started advocating for my daughter soon after she was diagnosed. I had to fight to get her an insulin pump, I had to fight to get her a 504 Plan at school.  As I told my story to others, I realized there were opportunities to speak up for those who can’t speak for themselves.

Shelley: Research progress has made incredible changes in my daughter’s life. It is an amazing experience to share your story with a United States Member of Congress and have them express support for your cause.

What does JDRF advocate for?

Joel: There are several key areas JDRF focuses on. First, we want to ensure that T1D remains a pre-existing condition so nobody with the disease is denied insurance coverage. We’re working to keep out-of-pocket costs for insulin and other tools predictable and affordable. We also want everyone to have access to, and the ability to choose, life-saving technologies to manage T1D, such as continuous glucose monitors (CGMs) and artificial pancreas (AP) systems. Finally, we are constantly working to build strong bipartisan support for the Special Diabetes Program (SDP), which provides critical Federal funding for T1D research.

Why is funding of the Special Diabetes Program (SDP) so critical to the T1D community?

Joel: The SDP has contributed more than 3.4 billion to T1D research since 1997, much of it research that couldn’t be funded by JDRF alone. Multi-year funding at such a high level allows researchers to conduct long-term research that is essential for innovation. I believe there will be cures for T1D in my daughter’s lifetime—funding research through the SDP is imperative to making that happen.

Shelley: The SDP has been instrumental in funding T1D research advances. It funded the Artificial Pancreas Project, a life-changing initiative that connected the insulin pump with the CGM to keep blood glucose levels in range. The SDP also funds TrialNet, which screens individuals for potential antibodies that cause T1D, and long-term studies to look at potential causes of T1D. This progress is so important to help find cures.

What role does advocacy play in health equity and access?

Joel: I hear stories all the time about families without healthcare or who have insurance plans that don’t adequately cover T1D supplies. Through our advocacy efforts, Medicare now covers CGMs, and we continue to work with insurance companies to ensure people with T1D have access to the tools and therapies they need to best manage their disease. We’ve also been hard at work urging Congress to reduce the cost of insulin, which has led to Medicare capping the cost of insulin at $35/month. And the three major insulin manufacturers are now following suit. 

Shelley: JDRF Advocates also partnered with members of JDRF’s Health Policy team to shape content included in the T1D Health Insurance Guide—comprehensive tool to help with navigating prior authorizations, denials and appeals, and applying for an exception to gain access to preferred treatments. There’s also a page devoted to assistance with diabetes prescription and insulin costs. 

What does the future of advocacy look like to you?

Joel: We won’t need to advocate! We’ll already have come up with cures and therapies for preventing T1D and it will all be covered by health insurance. But today, our grassroots advocacy efforts must continue. We will keep reaching out to our Members of Congress in person, via email, or through social media to keep issues that are important to the T1D community top-of-mind—we will keep advocating to get our lawmakers to act in our best interests nationally.   

What is an easy way to get involved in advocacy?  

Shelley: The easiest way is to enter your name and email at www.jdrf.org/join. This makes you an official JDRF Advocate! You’ll receive regular updates on our key issue areas like supporting Special Diabetes Program research funding and ensuring access to affordable insulin, and legislative “action alerts” when we need you to contact your Representatives and Senators. There are also a variety of roles within advocacy, including helping to recruit more advocates in your home JDRF Chapters, attending meetings with your Members of Congress locally, amplifying important messages on social media, etc. Let your voice be heard—we are stronger together!

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.