Tuesday, January 15, 2008

Capitol News from CFIDS.org

 News from Capitol Hill

Health appropriations challenges lawmakers
Just before lawmakers left D.C. for the holiday break, Congress passed the Consolidated Appropriations Act for 2008, a large bill providing funding for most non-defense domestic and foreign programs. Included in this bill was funding for the Department of Health and Human Services, notably the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC). Congress passed the bill on December 19 and it was signed into law on December 26, nearly three months after the beginning of the fiscal year that it funds. The Act includes an increase of less than 1 percent for the NIH and a 2.8 percent budget increase for the CDC. The previous bill, vetoed by the president in November, included a 3.1 percent budget increase for the NIH and 6.6 percent increase for the CDC. The NIH will receive $760 million less and the CDC will receive $240 million less than in the original bill; this will tighten funding for most programs at both agencies, including CFS research and education efforts supported by NIH and CDC.

As election cycles heat up, it’s important for all health advocates to voice their concern about these funding levels to incumbent members of Congress and candidates for office. Town Hall Meetings and campaign events offer opportunities to express support for increased health funding–particularly CFS funding–to those with the power to set these funding levels. Watch your inbox for news about Town Hall Meetings in your local area.

Congressional briefing planned for 2008
The CFIDS Association is working with members of Congress to host a briefing about CFS this spring. We will work closely with congressional champions to invite a panel of CFS experts to discuss current research highlights and opportunities to shape funding requests and agency directives. The last congressional briefing on CFS was held in 1996.

There will not be a Washington, D.C., Lobby Day in 2008, but we will conduct the fifth annual Virtual Lobby Day, as well as online seminars to sustain our tradition of engaging advocates in grassroots activities. With new leadership in the White House and turnover in Congress, Lobby Day in 2009 will be an especially important event. Stay in touch with us through the Grassroots Action Center listerv.

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Wolf Blitzer's blog:  http://politicalticker.blogs.cnn.com/2008/01/11/blitzer_what_should_i_ask_the_democrats_in_south_carolina/

He is taking questions for the next Presidential debate.  I think we need to submit questions along the lines of "what are you going to do to get a million disabled Americans back to work?", i.e. increase funding for CFS research.  On a per-patient basis, we get less than other diseases with better PR.  A disease that costs the country $25B in lost productivity every year should be worth more than $6M in research fund to get us back to work -- they'd get back more than $6M in taxes in just the first month that we're all back to our prior professions!

If they're not going to get us back to work, then they have to get us SSDI based on the Functional Capacity Evaluation that's supposed to be the sole determinant, and not based on the judge's prejudice that CFS/fibro aren't really serious.

If nothing else, a flood of questions about CFS may prompt CNN to look into the politics of CFS, and find out why  we get no respect and almost no research.  (A reading of Osler's Web will answer that question.)

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