On Monday, a group of eight advocates came together to meet with Rep. Todd Rokita, a Republican congressman who's been in office for less than a year after winning in November 2010. In total, we had 130+ years of Type 1 experience either present or represented in the room.
|See me there, in the back 4th from left... WEARING BLUE!!!!|
We then went around the table and everyone described some their day-to-day struggles with type 1 diabetes, particularly in dealing with Lows. One mom told about her teenage daughter's Low earlier that day that meant she didn't feel up to attending the meeting. Another mom talked about her daughter's anxiety and night-time Lows. We shared some stories about the costs of supplies and insurance, how we don't have the ability to get some great help because of regulatory delays, and how we are trying to live successfully on the road to a cure.
At the end of our 30-minute discussion, the congressman addressed the three "asks" that we'd pitched: 1.) Joining the informational Diabetes Caucus on the House side; 2.) Putting focus on the FDA and its regulatory process in order to make sure diabetes technology, such as the artificial pancreas, is receiving adequate, timely, and effective review; 3.) Continued government funding for Type 1 research through the NIH.
Rokita made no promises about future research funding through the NIH, but his fiscally conservative and recent-election steam may dictate how he comes down on that. He told us point-blank that wouldn't join the House Diabetes Caucus as some of his colleagues in the state have, because so many of these informational caucuses exist and he’s only joined a select few. But on the third point, Rokita did promise to focus attention on the FDA regulatory process because he’s concerned about that issue and has heard from other constituents outside of the Diabetes Community that it’s a problem. He agreed to speak with FDA Commissioner Hamburg about the guidance document.
So, there's that. That third component - the FDA regulatory process - is the most pressing concern and what needs the most attention, so I count this meeting a win. The rest can get more attention down the road, but the most time-sensitive and significant issue appears to be getting Rokita's attention.
One out of three... Not bad. We can work on the remaining two "asks" down the road. There's time.
Hopefully, future Promise meetings will go just as well here in Indiana and I hope others are getting that kind of feedback and support from their elected leaders. The JDRF Advocacy arm is counting up the meetings nationwide, and as of my writing this at the end of Wednesday there have already been 235 meetings scheduled or held throughout the country. That means we only need 197 more to reach the goal of 432 by the year's end! You can find out more information about meetings or involvement in the Promise Campaign here.