From the Desk of K. Kimberly McCleary

CFIDS Association president and CEO K. Kimberly McCleary.

August 2006

Last month, Senate appropriators—the members of Congress responsible for drafting laws that set spending levels and priorities for the agencies of the federal government—directed health agencies to do more for CFS research and education (see the story “Senate Directs Agencies to Expand CFS Programs”  in this issue of the CFIDSLink). While this direction isn’t binding yet, it has already hit the “radar screens” of the agency staff responsible for implementing the directives. As advocates, we need to protect this language as the bill moves through the next steps of the legislative process—on the floor of the full Senate, in the “conference” to work out differences in the House and Senate versions, when it comes to a vote by the full Congress and then goes to the President to be signed into law.

Now, to be realistic, the CFS language in the Senate bill is a microscopic detail in a vast spending measure that covers $605.6 billion in programs for all the agencies of the Department of Health and Human Services, Department of Education, Department of Labor, Social Security Administration and Corporation for Public Broadcasting. There are a great many controversial line items (and much larger dollar figures) likely to be the focus of lawmakers’ debates between now and when it becomes law. But having CFS recognized in the legislation, and knowing that when it is enacted, federal agencies should do more about CFS, makes it worth paying attention and taking action.

Should the bill call for more action and funding for CFS? Of course it should. But it could easily be less specific, and it could ignore CFS completely. What a message that would send to the federal health agencies.

We dedicate considerable resources to being part of the appropriations process year after year, all year long, because one small lapse in our attention or Congress’ could have long-lasting detrimental consequences. Lobby Day (not just one, but 14 annual events and counting), periodic meetings with appropriations committee staff, letters from constituents, follow-up mailings, quick and thorough turnaround on requests from Capitol Hill, effective representation from the Sheridan Group —all contribute to getting reasonable, well-documented requests recognized as legislative direction. Nowadays, even rock stars and billionaires have to do glamourless homework to get action from lawmakers.

So what can you do to ensure this language makes it into the final bill? Ask your two U.S. Senators to vote for the bill when it’s put to the full Senate after the summer recess. We’ve made it easy to do so, with a form letter available at the Association’s Grassroots Action Center.

When Congress returns after Labor Day, they’ll set a calendar for the final weeks of the session before November elections. It’s uncertain whether the Labor, Health and Human Services Appropriation bill will make it to a vote by the full Congress before the government’s year expires on September 30. Political splits and program priorities (often between health and education funding levels) often lead to a standstill, requiring emergency funding measures to keep programs going while Congress works through disputes. Some anticipate that several of the funding bills may be on ice until after elections. We’ll watch the process closely and alert advocates to opportunities to usher our language through, whatever the date on the calendar. And we’ll be in there pressing when discussions about FY08 (fiscal year 2008) appropriations begin days later.

K. Kimberly McCleary
President & CEO
The CFIDS Association of America