CFIDS Association president and CEO K. Kimberly McCleary

From the Desk of Kim McCleary

March 2008

The Federal Funding Adventure

Today I’m on Capitol Hill with Suzanne Vernon, PhD, our scientific director, and colleagues from the Sheridan Group who have helped map and execute our public policy strategy since 1992. Nearly every year for the past 16 years we’ve made these midwinter visits to the folks in Congress who hold the purse strings for federally funded medical research and public health programs conducted under the National Institutes of Health (NIH) and Centers for Disease Control and Prevention (CDC).

During this trip we’ll meet with 20 health appropriators, informing them of progress in CFS research, potential areas of “investment,” the magnitude of CFS, the burden it imposes on patients and the public, and the need to hold federal agencies accountable for what they do—and don’t do—to better understand CFS and serve those who have it. For most of the people we’ll meet with, this isn’t their first visit from CFS advocates, but our message serves as an important reminder of the needs of constituents and Americans who are to ill to make it to Washington, D.C., today or any other day.  

The timing of our meetings is important. At the end of January the president presented his budget request for the federal government. It didn’t project an optimistic forecast for those who prioritize our nation’s support of medical research and public health programs. Now Congress will determine how to respond by developing its own budget, and then dividing those dollars into spending bills that fuel the vast domestic and foreign programs. The Senate and House committees involved in this process have just begun their work. That means we need to renew existing relationships and build additional ones so our requests are considered as early in the cycle as possible, with reminders strategically timed to coincide with important decision-making points.

Last year you might remember a standoff of sorts between the Congress and the president that ended with essentially “flat” spending figures for NIH and CDC. This year, with a major election looming, there’s talk among congressional leaders of waiting until after November to put funding legislation through the laborious (and often contentious) process. That would mean plans for federal programs will go into a holding pattern between the first day of the government’s year—October 1—and whenever the bills pass both houses of Congress and are signed into law by the president. It’s a lot like a high-stakes game of “chicken” among party leaders, and between the Capitol Building and the White House. 

No matter what transpires, we’ll stick with the process, reinforcing our message and working hard to represent the CFS community’s needs at each step of the legislative calendar. We’ll monitor the committees’ deliberations and actions, asking at opportune times for you to help remind your members of Congress that you need their support. We’ll also present a congressional briefing this spring and will make other visits to staff and members of Congress as warranted. Hard-won progress made over the past 16 years will not be lost in a game of chicken.

Kim McCleary
President & CEO
The CFIDS Association of America

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