GAO UNDERSCORES PROBLEMS IN RESEARCH PROGRAMS

Advocacy Alert: 6/21/2000

GAO Underscores Problems In Research Programs
Senator Harry Reid (D-Nev.) today released the findings of a year-long General Accounting Office (GAO) study of the CDC and NIH research programs for CFS. The report validates allegations from The CFIDS Association and patient community that research has been set back considerably. It confirms the damage done by the CDC's misallocation of CFS funds, and further charges that the CDC and NIH have failed to coordinate research efforts.

Report Findings
The limited scope of the investigation and lack of recommended corrective measures in the final report is disappointing. However, despite its limitations, the report provides documentation of the numerous deficiencies in the federal government's response to CFS, and is a valuable tool in justifying requests for future action by Congress and federal agencies. The report documents:

• A declining CFS research program at the National Institutes of Health since 1996, including diminishing expenditures and staff
• Lack of effective communication between NIH and CDC about CFS activities
• CDC's misspending of CFS research funds, which has impeded progress in research on CFS
• Department of Health and Human Services' ineffective leadership of the CFS Coordinating Committee

Advocate Response
The satisfactory elements of the NIH and CDC CFS programs reported by GAO were largely the result of advocates' work with Congress to stimulate and direct an improved response to CFS. Advocates visiting Capitol Hill tomorrow for The CFIDS Association of America's ninth annual Lobby Day will be asking federal representatives to:

• Maintain strong report language in FY '01 Labor/HHS Appropriations Bills 
• Direct increased funding for CFS research by NIH, along with a proactive plan to stimulate extramural research in this field following the October 25, 2000 State of the Science meeting
• Monitor additional agency audits being performed by GAO, the Inspector General and outside accounting firms
• Direct the Secretary of Health to actively participate in the CFS Coordinating Committee, and to appoint a non-federal chairman of the committee, consistent with other DHHS advisory committees

For More Information
GAO has posted the text of the report on its web site at http://www.gao.gov/new.items/he00098.pdf. A more detailed analysis of report content will be published in the summer issue of The CFIDS Chronicle, due out in mid-August.

The CFIDS Association of America
Advocacy, Information, Research and Encouragement for the CFIDS Community
PO Box 220398
Charlotte NC 28222-0398
Toll-free Info Line: 800/442-3437
Resource Line: 704/365-2343
Fax: 704/365-9755
General e-mail: info@cfids.org

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