By Elena Lipkins and Gabrielle Brits, JDRF Greater Bay Area Chapter Board of Directors, Co-Chairs of Advocacy
ELENA: In March, my cohort and friend, Gabrielle Brits and I flew to Washington DC to attend JDRF Government Day. While on the flight, preparing my elevator pitch, I was overcome with reflections from my experiences with JDRF, this conference, The Hill, all spanning 4 years since the diagnosis of my daughter, Samantha.
What is JDRF Government Day (#JDRFGovDay)? Advocates from all JDRF chapters gather in DC to hear research and legislative updates from our team in Washington DC. Prior to arriving, we (chapter representatives) make appointments with Congressional Representatives or staff, to visit while on The Hill. Gabrielle and I made appointments with 11 Congressional District offices.
On the plane, I was thinking about my first #JDRFGovDay experience – 6 months after my daughter’s diagnosis. How did I get there? Great story. I was having lunch with my JDRF mentor Leslie Edelman, and she began to dial me in on JDRF’s Advocacy mission and the impact of federally funded programs, such as the Special Diabetes Program (SPD). Suddenly the fog lifted in my head. I thought: We can actually do something towards finding a cure, that didn’t require anything but a voice (and perhaps organizational skills)! Knowing it would help shape the future for all who live with T1D, I became energized and determined to help. Doing Advocacy work became very rewarding. After months of feeling hopeless and overwhelmed, I was armed with a new mission.
Fast forward to 2016 – just an hour after the flight landed, we are in the Hyatt’s ballroom with 200 attendees. The microphone is passed around, encouraging all to share their “brief” T1D connection. People shared their connections to T1D – a child, multiple children, a spouse, a parent, or their own experiences as an adult living with T1D. Next up – Advocacy Awards. Before I could touch up my lipstick, I hear my name called – I was recognized for conducting a New Member Outreach Meeting with Congressman Mark Desaulnier (District #11).
Next, Sunday was full of meetings – research updates, review of legislative process, and how to encourage advocacy in our local chapters. We were given tools to utilize, reference materials to review, and messaging to prepare us for the meetings with legislators on Monday and Tuesday. The California delegation met to create our general strategy and to make sure all Senate meetings were covered. We were literally calling offices to firm up meeting times up until that evening. I was again in awe of the team assembled to advocate for Medicare Coverage of Continuous Glucose Monitors (CGM) and continued support for future funding of the Special Diabetes Program that would be up for renewal in 2017. We were ready!
GABRIELLE: Each of us within the diabetes community has traveled a journey, whether as a caregiver or the patient. The path is long and windy and filled with many obstacles along the way. Since my son’s diagnosis in 2005, I’ve volunteered for a number of roles within my local JDRF chapter. But my path to advocacy was one that I stumbled upon.
In the summer of 2013, my son was selected to the JDRF Children’s Congress. My first moments of being in Washington D.C., I felt a surge of both emotion and inspiration, as over 150 children from all over the US descended upon Capitol Hill to urge Congress to support the Special Diabetes Program. Upon my return to California, those moments left a strong impression within me. My mission; to attend a Promise to Remember Me meeting with my Member of Congress. This led to the introduction of two moms, both with teenagers such as mine, and together we bonded. Soon after, I was asked to co-lead Advocacy & Government Relations for our Chapter. There wasn’t a hesitation. Now in our second term, my cohort Elena Lipkins and I have never looked back. Our journey challenges us to share our personal stories of raising teenagers with T1D, and to inspire our community to get involved, take action, and share their stories. Advocacy can all too often seem overwhelming and confusing, but really underneath it all, it’s quite simple; advocacy is the act of supporting a cause. Elena and I work fearlessly to engage our congressional districts by attending all four Bay Area Walks, Research and Summit conventions, arranging meetings with our Members of Congress and anything where advocacy can join the party. I am deeply touched by the many faces I’ve seen and met on this journey, all with truly inspiring, and sometimes gut-wrenching stories, these voices when we band together, help to inspire action, action from Congress that translates into critical funding for T1D research. This to me is the inspiration. And why until there’s a Type None, I will keep advocating, and my voice will not be silent.
On the Hill
The Co-Chairs of the Senate Diabetes Caucus have reintroduced bipartisan legislation (S.804) and (H.R. 1427)- “Medicare CGM Access Act of 2015” which allows for coverage of CGM and such technologies (Artificial Pancreas). We now have 251 co-sponsors in the House.
To email your member of Congress to support CGM’s for seniors, please click here.
To email your Senators, please click here.
The Bay Area Congressional Reps who have co-sponsored this bill:
1. Rep. Zoe Lofgren (4/16/15)
2. Rep. Anna Eshoo (4/28/15)
3. Rep. Mike Honda (5/13/15)
4. Rep. Mike Thompson (5/25/15)
5. Rep. Sam Farr (7/29/15)
6. Rep. Mark DeSaulnier (9/8/15)
7. Rep. Eric Swalwell (11/17/15)
Representatives we are still hoping to co-sponsor: Rep. Barbara Lee, Rep. Jackie Speier, Rep. Jared Huffman.
The Special Diabetes Program (SPD) supports research to cure, treat, and prevent both type 1 diabetes and type 2 diabetes. The program provides $150 million per year for therapies such as the Artificial Pancreas Project, Clinical Trials (such as smart insulin) and encapsulation. Timely, multi-year renewals help us to continue to research and build these advances.
Just last week, over 400 JDRF staff and volunteers traveled to Capitol Hill to ask their Members of Congress to sign a letter being circulated throughout the House and Senate Diabetes Caucus leaders in support of the SDP.
Please join us by emailing your Members of Congress and asking them to sign the SDP letter. A simple letter where you can populate your name and address can help to show your representative you support this vital program.
Advocacy in Action
This fall, Gabrielle and Elena are planning local meetings in each of our 11 Bay Area Congressional districts. JDRF’s Promise to Remember Me campaign began back in 2000 to build and strengthen direct relationships between legislators and their constituents in the T1D community. JDRF staff and volunteer leaders prepare individuals and families whose lives are impacted by T1D to meet their legislators in their home districts and states, educating them about their essential role in securing government funding and support for T1D research.
Promise campaigns begin in the summer of each odd-numbered year, and with each subsequent year, we grow the program to new heights. In fact, in 2013 we set a new record with more than 400 Promise meetings!