“You need a time out!” Luke said, as I snarled and stomped down stairs. He was right. I’d just gotten back from four days of glad-handing, schmoozing, and pitching T1 research funding in Washington DC, and I was exhausted and having a toddler-class melt down.
But it was so worth it. Every year, JDRF brings advocates to DC to lobby their state legislators on one or two specific points, and it’s an antidote to cynicism. JDRF takes a couple days to bring the advocates together before turning them lose on the Hill, and these are all some extraordinary people. Some have lost children to T1, some immediate family, many live with it themselves, and all have harrowing stories – yet they positively radiate joy and enthusiasm. I wish there had been more time just to hear everyone’s stories and meet more bloggers in person. I briefly met Karen and Jeanne and hope to meet Moira, Hallie, and Kathy some other time.
There were glimpses of DC’s underbelly. One morning, as we waited in line to get into one of the Congressional buildings, we saw a lobbyist flap down the stairs past us, with his garish tie, trenchcoat, and all. He cackled, “Don’t bother going in – we got all the money, and there’s nothing left!” DC humor.
But we were there as volunteers, and staffers visibly softened when we explained we were there for children, siblings, parents, friends, or ourselves. Sympathy doesn’t always break down along party lines – often it’s a staffer’s or legislator’s personal connection that turns an office into a supporter. Not all legislative offices genuinely back continued research funding, but most find the “ROI” pretty compelling. One third of Medicare costs currently go to diabetes, and one out of three Americans born this year will develop diabetes. Most will develop Type 2, but Type 1 rates are doubling every 20 years, and the average age of diagnosis keeps dropping (Luke will soon be typical).
Last year, lobbying (from the ADA and the National Indian Health Board as well as JDRF) renewed the Special Diabetes Program, which provides $150 million annually for research. It has helped reverse retinopathy, stopped T1 from progressing in trials, funded smart insulin development, and moved the Artificial Pancreas closer to reality. All this will disappear unless Congress votes to renew the SPD this year (hint – you can help in minutes).
Friday, as we arrived, we heard that the FDA just approved Artificial Pancreas out-patient trials that will run till 2014. Thanks to the 100,000+ signatures JDRF gathered, and thanks to Congress urging the FDA to move ahead “expeditiously” with a framework for the trials, we’ve come to the point where someone like Sen. Shaheen’s granddaughter might get a real vacation from diabetes.
And my son won’t have to put me in time-out when I come home, exhausted but happy.
A few random images (thanks to Brendy, the other WA delegate, who helped me overcome my aversion to cameras!):