Advocating to Congress for Rheumatoid Arthritis Research

Brad Health Guide
  • L to R, Jeff Lawson-Rheumy, Myself, Tammy - ACR and Senator Joe Wilson R-SC

    I know some of you know I was recently in Washington DC advocating to Congress and the Senate for Research for RA and other Auto Immune diseases. The American College of Rheumatology asked me to go. I actually had never been to DC before, so to go and see some of the sites and meet Congressmen and Senators, not to mentiong speaking before them, was kind of a treat for me as well.

     

    I arrived on a Sunday and we got right to work, lots of training on what we would be asking for and facts we could use to support our position. We had about 30 teams of three or more in our group. Most had a Rheumy, a Patient and a rep from the ACR. We asked that the Senate fix the SGR, this is the formula that Medicare uses to compute how much to pay Rheumys for services rendered. There is a proposed 30 percent cut in this....which would make RA services pretty much unavailable to people on Medicare/Medicaid as most doctors would just plain stop accepting Medicare. They have put a band aid on this for the last few years, and it looks like that is what will happen again this year. We also asked them to not cut, or cut only a small amount from the NIH, The NIH is very similar to the CDC. NIH does a ton of research into RA and related diseases. We also brought up the fact that people on Medicare cannot access the RX savings that people on private insurance can. Medicare feels that would be a kick back.....One Senator, the senior Sen from GA said this was not true........and got it handed to him BIG time by a lot of angry people ON Medicare! LOL! He apologized and offered to look into it. As we told him, it would place NO stress on the budget, just allow us to enjoy savings on Biologics, etc. (think of the $5 Humira plan).

    Add This Infographic to Your Website or Blog With This Code:

     

    We spoke to groups, and then met our states reps in there private offices. The Rheumy with me, Jeff Lawson from Greenville, SC ping ponged them pretty well, and kept them on their toes! I found all of them to be very welcoming and they seemed to listen to what we had to say. I had upped my Pred for the trip, so I had hand tremors pretty bad and made for a good gimp! LOL! It was a really amazing thing to see behind the scenes of the Federal Govt. We had breakfast in the Russell Senate Bldg, in the Kennedy Caucus room, where the Watergate hearings were held. Saw the Rotunda, Supreme Court, and Library of Congress along with the other Senate and Congressional office buildings. Those are some BIG buildings! I had to find an "emergency" electrical outlet three times for my power chair! I really hope what we had to say helps, and they asked me back next year, so I guess I did okay.

     

    Some Senators and Congressmen were pretty well schooled in Arthritis, others were quite unaware of the different types. We had to keep our speeches short and our private meetings as well, so we tried to get our full message out in front of them and still leave a bit of time for questions, some asked several and really seemed interested in looking into these items for us.

     

  • I would encourage anyone to contact your local Senate or House office and let then know your stand on these topics. With the Super Committee coming up and elections as well......they are very open to listening to those of us who will be voting for them!

    Add This Infographic to Your Website or Blog With This Code:

     

    Brad

Published On: September 28, 2011