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Summer 2003 

DC Dispatch
Your CFIDS Public Policy Report
By Jamie Davis

CFS committee denied key leader
In 1996, Donna Shalala, then Secretary for the Department of Health and Human Services (DHHS), chartered the DHHS CFS Coordinating Committee (CFSCC) — the first federal committee dedicated to CFS. Kim Kenney , The CFIDS Association’s president and CEO, was one of seven members of the public appointed to the committee. She served a four-year term, extended by DHHS until February 2002.

The CFIDS Association was instrumental in building support for the formation and maintenance of the Coordinating Committee. A 2001 report from the General Accounting Office, a congressional accountability agency, found that the CFSCC’s structure was not in full compliance with the Federal Advisory Committee Act. The Association launched efforts to restructure the CFSCC to expand the number of non-federal members, limit voting privileges to the non-feds and to provide for a non-federal committee chairman. These changes would make the CFSCC more like other DHHS advisory committees.

With support from the current administration, a charter for a new committee was signed and nominations for committee members, seven researchers and four others with broader professional experience (disability experts, patient advocates, medical professionals, etc.), were solicited. The Association submitted 19 nomination packages, among them one for Kenney, who had satisfied the required one-year break in service.

The Sheridan Group and the Association carefully monitored sluggish progress and met regularly with key DHHS officials charged with evaluating nominees and creating an initial charge to and agenda for the committee. In doing so, we balanced persistence with patience, as installation of a new administration, 9-11, bioterrorism, SARS and other crises dominated the attention of DHHS staff.

In July, Dr. Larry Fields from DHHS contacted Kenney to clarify her role within the Association. A few days later, Fields informed Kenney that her position as chief executive officer posed concerns about potential conflict of interest. He stated that the department’s general counsel would not support her appointment to the committee and that she had been removed from further consideration.

Their decision is, of course, a great personal disappointment for Kenney, but it is also a great loss for the CFIDS community. When the committee finally meets for the first time (probably late this year), she will not be able to share her unmatched command of scientific and policy issues, and perhaps as important, her understanding of the various federal health agencies and federal funding processes.

The Association remains committed to ensuring that the new committee reflects the appropriate experience and representation of all stakeholders in CFIDS issues. Two members of the Association’s Board, chairman Jon Sterling and Joe Lane , remain in consideration as appointees to the committee. Both would serve admirably, as would the other people nominated to the committee by the Association. We are also making inquiries to ensure that the decision by DHHS is consistently applied to the CFS committee and other advisory bodies.

Lobby Day
The Association is gearing up for our 12th annual Lobby Day, to be held in Washington, D.C. on Sept. 18, with mandatory participant training on Sept. 17. We welcome all advocates — PWCs, family, friends — to participate in this empowering event. For more information or to register, send an email message to: lobbyday03@cfids.org, or call the Resource Line at 704-364-2343. Please make plans to join us on the Hill!