A Mother-Daughter Duo Takes on Capitol Hill at 2023 JDRF Government Day
JDRF Government Day is held every spring. Dedicated Advocacy volunteers from all over the country meet with our nation’s leaders in Washington DC to share their stories and ask for Federal support of type 1 diabetes (T1D) research and health policies that benefit our community. This year, the event took place March 19-22 with a focus on the renewal of the Special Diabetes Program (SDP), which provides $150 million annually for T1D research, and insulin access for all Americans. Our NorCal Chapter had 6 attendees, including Bonnie Carlson and her daughter Marina Kaypaghian. They attended about 10 meetings, keeping them very busy on Capitol Hill. We sat down with them to hear about the event from a mother-daughter perspective.
JDRF NorCal: What were the most memorable highlights from your time at JDRF’s Government Day?
Bonnie: The biggest thing for me was being able to attend with Marina. We’ve participated in various advocacy and volunteer activities with JDRF over the years, but this was our first event together as adults. It was meaningful for me to see Marina come full circle and become a full-fledged Advocate. Another highlight was hearing everyone’s stories from around the country. It reminded me why we were all there and gave me the energy and purpose to make our voices heard on Capitol Hill.
Marina: For me, it was powerful to be in a room filled with people who came from all over to support this cause. Although I’ve participated in several diabetes events and met many diabetics, this was the first event of this scale for me. I also found the presentations on technology and research, particularly the new Tzield drug, fascinating. As a pre-med student, I was inspired by the science, and it made me even more curious about our body and how it functions. I also realized the intersection of health and legislation and became more interested in policy. I met a staffer who was also pre-med and now working under a congressman – that was particularly interesting to me.
JDRF NorCal: What impression do you think Marina had as a young person on the Hill?
Bonnie: I think it was great to have someone her age. It really did change the dynamic of the meetings, because she’s a new voting constituent, and I think they really appreciate seeing young people get involved in the process. To have somebody who’s 18 getting involved in the process is a pretty big deal, and everyone was really interested in hearing what she had to say. She was very well spoken and poised.
Marina: I was definitely one of the youngest at Government Day. I think they saw me as a healthy, young, functioning person who is entering society. And that this disease could either make me or break me. I think a lot of people either think of diabetes with older people or with little kids. And I think it became a lot more relatable for some of the younger staffers we met.
JDRF NorCal: What do you hope these congressmen and staffers remember most from your visit with them?
Bonnie: The human faces and our heartfelt stories. We had a couple folks who told us that our message was very clear. It wasn’t just about legislation. It was a human. They might have initially thought that the $35/month cap on insulin cost was already in place for Medicare. But then they understood the nuances, that we need insulin affordability for all Americans. There was a huge difference having these meetings in person rather than by Zoom, because so much happens in person, in the room.
Marina: I really hope that they remember all the effort and passion that we put into this and how much their past support has pushed us forward, and how much it has made my life easier and everyone else’s life easier dealing with T1D. I think seeing the impact, even in just one person, instead of reading about it, can really facilitate the most action. I showed my pump to almost everyone we met and explained that funding from the Special Diabetes Program – which we were advocating for – was what made this kind of technology possible. I was able to speak about how just a few years ago I was in a clinical trial for this pump and not even two years later, it’s available on the market. It’s really important for legislators to see that T1D isn’t some elusive disease. With research supported by the Federal government, we’re making headway and we’re continually making things astronomically better for people like me living with T1D.
JDRF NorCal: After attending Government Day together, what do you want people to know about JDRF Advocacy?
Bonnie: That JDRF Advocacy is an organized and powerful force! Our legislators are impressed by JDRF Advocacy and will listen to us. Everyone can become a JDRF Advocate and make a difference, using their voices from their own homes. Everyone can write to their representatives and ask them to support the renewal of the Special Diabetes Program. I encourage everyone to sign up today and start receiving the action alerts.
Visit jdrf.org/join to learn more and sign up to be a JDRF Advocate.