Lobbying Congress – JDRF Government Day
Last weekend, I was lucky enough to go to Washington DC for JDRF’s Government Day and join 175 amazing advocates from across the country in lobbying Congress on behalf of diabetes research. JDRF holds this event every spring, and this year the focus was on moving ahead with the artificial pancreas, a potentially life-saving technology already available in Europe and Canada.
I had my doubts about the effectiveness of flying someone like me into DC to shake hands with legislators. It’s hard not to be cynical. But I was curious to get a glimpse into the daily legislative grind, and I’ll try anything that betters Luke’s chances. Five of us from Washington state made the rounds of WA Representatives and Senators. All except me were old hands and a pleasure to watch in action.
In intense 5-minute meetings (mainly with legislative and health aides), we thanked them for renewing the Special Diabetes Program (even if they’d voted against it – this is politics, after all), outlined the good that has come out of SPD research (like the Dexcom CGM Luke wears), pointed to the $36 million that Washington state and the tribes receive from the SPD, and asked them to sign a letter urging prompt FDA consideration of out-patient artificial pancreas trials. We packed a lot into those five minutes, thanks to the JDRF staff (just 12 people), who put together dense briefings for all of us. This wealth of information, along with JDRF advocates’ passion and volunteerism, has apparently made JDRF one of the most respected non-profits on the Hill.
I was amazed at the extent of type 1 diabetes just among the WA legislators and aides. Two had type 1 diabetes in their extended families, most had immediate friends or co-workers with type 1, and everyone who’d met kids with T1 at last year’s Children’s Congress or Promise to Remember Me meetings asked about them by name. In Rep. McDermott’s office, we saw a picture of Luke and another boy from last year’s meeting, which brought a huge grin to my face. Another WA advocate, Sally, said she’d seen her son on her legislator’s desk as well. “They don’t remember us,” she said, “but they do remember the kids.”
But T1 doesn’t just affect kids. A panel of bloggers invited to Government Day pointed out that an incredible 85% of people with T1 are adults (since kids with T1 do grow up to become adults), and half of those are newly-diagnosed. We were lucky enough to have a celebrity spokesman with us: Gary Hall (who now lives in Seattle), 10-time Olympic medalist in swimming. He was diagnosed with T1 in the middle of his Olympic career, and went on to win more medals after diagnosis than before. He graciously made the rounds with us, kept discussions on track, and put up with our parental reflexes – “If you’re feeling low, I have some M&Ms.” “Teddy grahams – would you like some of those?” Nothing like winning Olympic gold to be pelted with graham crackers.
When we weren’t shaking hands on the Hill, we were in back-to-back JDRF panels back at the hotel, which were intense as well. In the opening session, everyone told their connection to type 1, and it ran the gamut from babies diagnosed at 7 months to adults diagnosed at 50. Advocates included adults with type 1, parents, grandparents, and friends. A few had lost family to the disease and remained active advocates – what more courageous path can you take?
One of the most eye-watering moments came when a woman who’d lived with T1 for 39 years stood at dinner and said, “Speaking as my child self, I can tell you that children with T1 are always apologizing. Sorry for high or low blood sugars, sorry for not testing or forgetting to bolus. To all the parents out there, I just want to say, I’m sorry for all this has put you through, I’m sorry you worry, I’m sorry I have type 1 diabetes.’” I heard sniffles on all sides as I buried my face in a napkin.
On a more optimistic note, another woman whose child has T1 spoke about loving to volunteer as a nurse at diabetes camps, because “these kids just glow. They are deeply, deeply loved by you all, and that shines through.”
The final note of hope for me came with dinner on the last evening, when JDRF’s President and CEO Jeffrey Brewer spoke about the need be realistic about when we’ll find a cure (it’s likely not just around the corner) but also how focusing on improving daily management along with detection and prevention will all move us closer to a cure, while keeping people healthier and happier in the meantime.
I left the weekend hopeful that things will get better and deeply impressed that it is still possible to have an impact without slush funds or corporate connections. Hopefully Luke and his coherts can pick a different cause when they grow up, but I do hope they take one up.
So, seriously: get involved (ADA, JDRF, you name it)! It doesn’t have to be big: make just one phone call, show up at one meeting, write an email or letter to the editor – this really will have an impact. Just a few calls from continuents in a district can put an issue on a legislator’s radar, and 5-10 calls can ratchet it up to a real issue. It doesn’t take much to get their attention, precisely because most people think their calls and emails won’t have any impact. You know better. 🙂
Updated – Turns out the first WA state legislator to sign the FDA letter was someone who previously had not been a firm supporter of diabetes issues. Hooray!