Annual Appropriations Advocacy
Every year, the federal budget is created through a complex process of interactions between Congressional committees and the White House. Agencies of the federal government, including health agencies such as the National Institutes of Health (NIH) and the Centers for Disease Control and Prevention (CDC), receive their funding through an "appropriation" from Congress, signed into law by the President. The Labor, Health and Human Services, Education and Related Agencies (L/HHS) Appropriations Committee is responsible for funding decisions that affect most of the agencies related to biomedical research and health care delivery systems.
Funding for CFS research is provided by NIH and, to a lesser degree, the CDC. CDC also has an active internal research program conducted by staff investigators. The maintenance and growth of these research programs depend upon the annual appropriations process; therefore, since 1992, the CFIDS Association of America has worked diligently to increase federal appropriations directed to fund CFS research. A historical listing of CDC and NIH funding for CFS research is available at http://www.cfids.org/advocacy/federal-funding.xls.
Calendar of Events
Appropriations activity begins in late winter with hearings held by the House of Representatives L/HHS Appropriations Committee. Each year, the Association provides its requests to Congress for specific funding and report language. This "language" gives NIH, CDC and other agencies specific direction from Congress as to how funds are to be used.
In the late spring or early summer, the House L/HHS Committee generally "marks up," or writes its bill proposing spending amounts for thousands of federal programs. The Association's annual lobby day activity has generally been scheduled to coincide with the bill mark up, so that members of Congress are hearing directly from CFS advocates just before these key decisions are made.
Depending upon other pending legislation, the Senate may take action shortly after the House concludes its activity on the bill, or it may be put off until after the traditional August recess. In either event, final approval of the bill generally is secured at the last minute, just before the government's fiscal year ends on September 30. Occasionally special bills are required to give Congress and the President more time to work through differences and the deadline for approval of appropriations bills extends into late fall or early winter. This hinders work at the agencies, for they are unsure of spending levels and may delay planned research until funding decisions are more secure. Click here for the CFS-related report language from the most current year.
Participating in Congressional Advocacy
The first step in taking action is to be sure you are registered to vote. If you are registered, and don't vote, you cannot exercise the full strength of your political influence. To learn more about registering to vote, see below.
There are numerous ways that advocates can make their voices heard regarding federal spending for CFS programs. The first is to become a member of the Association's Grassroots Action Center Listserv (GAC) program. GAC members are informed of timely opportunities to contact members of Congress about key CFS-related issues. As the appropriations cycle continues through the year, GAC members are sent Alerts make them aware of critical messages to convey to their members of Congress, or L/HHS committee members as funding decisions are being made.
Joining the Association for its annual Lobby Day is another way in which to participate in the process. It is critical that Members of Congress hear directly from their constituents about the impact of CFS and ways in which Congress can improve the government's response to this issue. Persons with CFS (PWCs), family members and friends are encouraged to attend. This 2-day event also provides an opportunity for persons affected by CFS to establish friendships and relationships that often extend beyond the time spent together in Washington, D.C. In 2007, the event will take place on May 14-15.
Establishing a personal relationship with your members of U.S. Congress, your representative and two senators, is one of the most important ways in which you can influence Congressional activity on CFS issues. Meeting with your member in his or her district office (especially during election years), attending local town hall meetings, and volunteering in a campaign office can all provide opportunities to raise the Congressional member's awareness of CFS.
You can learn more about the Association's Congressional activities through our quarterly reports called "DC Dispatch", published in each issue of The CFIDS Chronicle. We also report on these activities in CFIDSLink, our monthly e-newsletter. Other sites on the Web provide information about government, voter registration, etc. Visit our resources and links page for more.