The Squeakly Wheel Gets the Grease

cake and mikayla in dc

On Wednesday, we met with our local Congressional Representative. He was kind enough to meet with us in person, stepping out of an Energy and Technology session to spend at least 20 minutes with us in an adjacent chamber. As soon as the handshakes were done, Caitlin launched in with her story. She handed him a piece of real titanium and which she had written “300,000 kids” and “It costs too much to wait to fight arthritis” along with her name and the bill number (H.R. 1210). Mr. Rohrabacher was very patient and attentive as he listened to how arthritis has affected her life, how she could never play soccer and always in the slow one, how much pain she is in and how she had to have hip replacement last year. He asked a couple of questions of her, asking how she feels now, what grade she is in etc….He was very sympathetic.

Then it was mom’s turn to talk. When we last met with Mr. R in 2007, his response to our request for support was that he does not believe in “disease specific research”. I know that he is frugal and – political party affiliation aside – I understand his position. So, I was ready this time to discuss the high cost of arthritis to the economy. $128 BILLION a year in direct and indirect costs. $12.8 billion in CA alone. He asked me how much we spent last year on Caitlin’s health – and I was happy that I had added up those figures. I talked about disability and how many people end up having to leave their job within ten years of diagnosis. He asked about the causes of the disease and I answered about how much we still don’t know and then launched into a request for increased NIH funding. I told him that ultimately – NOT doing something about arthritis now is the expensive decision. 46 million people now, but 67 million people by 2030.

Mr. R explained that he has so many people coming with specific diseases asking for funding. He says he’s growing to a point where he automatically turns off to diseases that are within somebody’s control. Things like sexually transmitted diseases…. Or diabetes that is preventable through diet and exercise. Look – I said – arthritis is over 100 diseases and many of them are auto-immune – these are not preventable conditions. Even osteoarthritis is not some badge of poor living and poor choices. Did you know that more children have arthritis than type 1 diabetes, I asked? He raised an eyebrow – Really?

And then he said it. You know, it’s the groups with political pressure that get the funding. The groups that keep banging the drum and demanding get the job done. I’m glad you’re here, he said – because now I know that this is an important issue to you. Otherwise, I wouldn’t have known. But the unspoken denouement was… “But you are only one family. I’d need to hear from lots more…”

So, there it is folks. I don’t know whether Mr. R. will ultimately sign on as a co-sponsor to our bill or not. I appreciated very much that he took the time to meet with us in person – and he was very generous. When we left, I didn’t have a nagging feeling that we hadn’t had the opportunity to make our case – we got to say a lot, and he was very responsive. But he was honest – it’s the squeaky wheel that gets the grease…. That’s why juvenile diabetes is so successful. They come out in large numbers demanding funding and programs. The CDC has diabetes programs in all 50 states and arthritis programs in 12. Please don’t misunderstand – I’m not minimizing the seriousness of any other disease. But if we want the change for the people we love, it’s time to start squeaking. And keep squeaking!

 

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