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9Mar/12Off

Hemophilia Days on Capitol Hill

March is National Hemophilia Awareness Month. Groups like the National Hemophilia Foundation (NHF) http://www.hemophilia.org and the Hemophilia Federation of America (HFA) http://hemophiliafed.org/ spend countless hours working diligently all year long to ensure that legislative action is kept up with and followed through to protect the hemophilia community’s rights and needs. Once a year, the NHF does a group trip to Capitol Hill in Washington, DC and hundreds of hemophiliacs and people associated with hemophiliacs meet with legislative aides, congressmen, and senators.

Lately (the past year or two) I have been getting more-and-more involved with my blood brothers and sisters in the community. So, it only made sense that I would march down to DC and speak up for my rights (especially considering how close I live to DC). I signed up and attended this year’s NHF Washington Days. I was not disappointed!

First things first … These guys REALLY have their act together. We met the evening before our walk on Washington, and the NHF handed each of us folders and information surrounding the different issues we would be discussing. They had setup meetings for each of us, and made sure that the appropriate constituent was the lead person for each meeting. Even though I would be attending meetings all day, my lead meeting was with the office of the Honorable Representative Roscoe Bartlett (R-MD), because his district includes Frederick County, Maryland; which is where I live.

Thursday, March 8, 2012 was when we would make our mark! That morning, we met in the Hart Senate Office Building and discussed our plan of action.

I’m not sure how many of us had signed up and attended, but I would guess in the mid-three hundreds. It was a fairly large crowd. And, we were extremely prepared, thanks to the offered folders and info sheets.

Our agenda for the day was to essentially talk about three topics:

  1. The CDC intends to reduce funding/support for the hemophilia program by about $3,000,000. For this and a few other reasons, we fear that this would result in the CDC cutting support surveillance for about 85 of the 135 existing hemophilia treatment centers (HTC’s) leaving us with only ~50 HTC’s. Since HTC’s are where 75% of the bleeding community receives its care, the change would be detrimental to say the least.
  2. Support continued implementation of the affordable care act (ACA). The ACA has many benefits, including: the elimination of lifetime caps and pre-existing conditions exclusions, both of which would be extremely harmful to the hemophilia community. In addition to those things, the ACA also provides an extension of dependent coverage up to the age of 26. All of these things are imperative for families with hemophiliac members.
  3. Co-sponsorship of HR 1919: the bleeding disorders screening, awareness, and further education (SAFE) act of 2011. This bill would allow for accurate diagnosis prior to severe bleeding issues and is very beneficial to women bleeders along with mild hemophiliacs.

Each of my meetings went well, and I made connections with each of the legislative aides. After introductions, my cohorts and I spent a few minutes describing hemophilia and explaining some of our stories. Then we dove into a request for action on the three topics we had pre-planned to discuss.

I was on the Maryland team, and we visited:

  • Office of Representative Steny Hoyer (D-MD)
  • Office of Representative John Sarbanes (D-MD)
  • Office of Representative Roscoe Bartlett (R-MD)
  • Office of Representative Elijah Cummings (D-MD)
  • Office of Senator Barbara Mikulski (D-MD)
  • Office of Senator Ben Cardin (D-MD)

Every visit was fun and a fantastic learning environment for me and the others. We were received very nicely by each of the aides and I, for one, felt the honest care and concern that was relayed by each of the legislative aides.

Before leaving each of our meetings, I handed out copies of my book, Survivor, to the aides and left a copy for each representative and senator. I felt the love, and absolutely felt like our issues were taken seriously.

All-in-all a fantastic day full of American heritage that made me proud of my country and its representation!

I will absolutely do this again next year!

Your hemophiliac advocate,
Vaughn

Posted by Vaughn Ripley

Comments (2) Trackbacks (0)
  1. Great to see you in action again! Thanks for the breakdown of the agenda items. I hope to make it up to D.C. to do this one of these days. I’ve visited Austin for some local advocacy work, but no trips to the hill as of yet.

  2. Awesome post. I wanted to go this year and even registered, but we had to be conservative with money this month as we both transitioned to new jobs. I am very grateful for all of you who participated and I’m glad you’ll be there next year. It’s great to hear about what you did while there. Thanks again for sharing.


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