Sharing Personal Stories Is What It’s All About

That is the message heard loud and clear at JDRF 2016 Government Day. What is JDRF Government Day? It’s an annual gathering of more than 170 of our standout grassroots JDRF Advocates in Washington, D.C., for three days of information-sharing, education and celebration. These volunteers are already pros at meeting with their Members of Congress and their staff—whether in their home Districts or right here in the nation’s capital—to share their stories of living with type 1 diabetes (T1D).

JDRF Advocates hail from every state. They are adults with T1D, parents, grandparents and friends. Many of these volunteers have multiple family members who live with the disease, and all of them put significant time and energy into their advocacy because the physical, emotional and financial costs of T1D are too high.

Following our successful efforts to help secure a two-year renewal of the Special Diabetes Program (SDP) in April 2015, we know what an impact we can make when we speak with One Voice. And at this JDRF Government Day, we’re talking about Medicare coverage of continuous glucose monitors (CGMs).

Anyone affected by T1D knows how important it is to maintain tight glucose control and avoid dangerous high and low blood sugar episodes. CGMs detect and display blood-glucose levels continuously, giving their wearers invaluable data about what is going on with their T1D. Though the FDA approves them, doctors prescribe them and national diabetes clinical guidelines recommend them, Medicare doesn’t cover CGMs. Yet. This leaves Medicare-eligible seniors with diabetes vulnerable to hypoglycemia—severe low blood sugar events that can lead to seizures, unconsciousness and hospitalization.

JDRF Advocates won’t accept this. Karen Woicekowski, a JDRF Advocacy Leader from Delaware, says, “CGMs are not a luxury. They are a durable piece of medical equipment that must be covered for all who need them.” Karen’s son has lived with T1D for 23 years, and her father had the disease. As an Advocate for T1D issues for 19 years, Karen knows how far her voice can carry on the Hill.

Research alone will not deliver improved treatments and a cure for T1D. If the products of the groundbreaking research that JDRF funds, in addition to that funded by the SDP, are not approved by Federal Regulators or covered by private insurers, they will not reach people with T1D. The very same can be said of Medicare.

Grassroots Leadership Team Chair Mary Horn and JDRF IBOD Chair John Brady flank Advocacy Leader Rookies of the Year.
Grassroots Leadership Team Chair Mary Horn and JDRF IBOD Chair John Brady flank Advocacy Leader Rookies of the Year.

Each of us has a personal story to tell, and when we join together and advocate with One Voice, we are unstoppable. We’re hearing some great stories here at JDRF Government Day, and we’re sharing them as we go on social media at #JDRFGovDay. Add your voice and share your story today. We’re looking forward to another wonderful day today as our Advocates take to Capitol Hill!

By Cynthia Tully