Monday, September 19, 2011


“Politics is supposed to be the second oldest profession. I have come to realize that it bears a very close resemblance to the first.” - Ronald Reagan
I had the honor of visiting Washington, D.C., this past week on behalf of the Scleroderma Foundation. The work we do locally to provide support and education to those with scleroderma is vital. Our local fundraisers provide "seed" money for researchers, who can do early studies on a good idea, but we cannot raise the kind of funds we need to do big clinical trials. That money, in general, comes from the NIH (National Institutes of Health).
The NIH is a large organization, but the research money is allocated across the nation. Much of the "bench" research in the United States is funded with NIH dollars, as is a great deal of clinical research.
As you are no doubt aware, scleroderma research does receive some funding from the NIH. Our goal in visiting Washington, D.C., was really two-fold. First, we tried to impress upon our representatives the importance of NIH funding. We talked about high tech jobs, advancement of science, and the health of our citizens. Second, we are hoping that some of the Congressional leaders with whom we spoke will join us on a bill, the "Scleroderma Research and Awareness Act." This bill, which asks for no additional funding, does ask that the NIH fund scleroderma research and that the CDC (Centers for Disease Control) promote awareness of scleroderma. The ultimate goal is that those affected will be diagnosed more quickly (because their doctors recognize the disease) and will have treatments available (because the research has been done). Ideally, when the cause is eventually known, the disease may even be preventable or curable.
So, we spent an exhausting couple of days marching through the House and Senate buildings, discussing our message and our "ask." It was very interesting to see the back side of politics, where the deals are made and the decisions are influenced. I came to realize that the saying "the halls of power" is quite accurate--many of our meeting took place in hallways, as staff members have limited space available to them (the buildings are gorgeous but staffs have grown substantially since they were built).
One of the unexpected highlights of my trip was meeting with the Senior Policy Advisor to Congressman Brian Bilbray, Gary Kline. (photo above) From our leadership within the Foundation, I learned that Congressman Bilbray is a huge supporter of the NIH--he has an incredible reputation on the "hill" for his emphasis on funding of the NIH. In addition, Gary felt that the Congressman would be interested in supporting the bill. So, I'm holding my breath (maybe not, lungs won't tolerate that) and hoping that he was right. Regardless, it felt great to think that my trip was worthwhile and quite heartwarming to know that my own Congressman was such a great supporter of medical research.
OK, next blog will review the results of my one year follow-up in Chicago. But, wanted to share this rather more exciting information first! :)
ADDENDUM: Congressman Bilbray is, indeed, co-sponsoring the Scleroderma Research and Awareness Act. Thank you, Congressman!