Thursday, November 10, 2011

One Promise Made

Just like last year, I'm participating in the Promise To Remember Me Campaign and meeting with my area's elected leaders in Congress to discuss diabetes.

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.



Our group included three Adult Type 1s - myself, fellow DOCer Jeff Neitzel who was diagnosed 27 years ago at age 13, and another man diagnosed 26 years ago at age 14. Jeff's mom was also there, representing Jeff's sister who was diagnosed almost 40 years ago. We also had a grandmother, a mom, and a family whose 6-year old daughter was diagnosed at 16 months old.

See me there, in the back 4th from left... WEARING BLUE!!!!
Being a freshman lawmaker, Rokita hadn't before heard the JDRF pitch and wasn't familiar with the group. So, he got a brief intro of the history and mission. Then there was an update on the current status of the Artificial Pancreas and efforts to obtain guidance for outpatient clinical trials. Rokita asked some basic questions about the JDRF and its research funding, saying at one point he'd like to see more private sector funding of this research, and he also wanted to know about the number of people worldwide with Type 1 and what research has shown us to date about the causes and genetics.

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.

2 comments:

Scott K. Johnson said...

Nice! Thank you for going and sharing your story Mike. Politics is politics, but we need to be sure he can never say that nobody cares about these issues. Well done!

Karen G said...

Thank you so much for attending a Promise Meeting and for sharing it with all of us!!! I'd say getting support on even one "ask" is definitely a big win!!