CFS Advisory Committee Meets

The CFS Advisory Committee to the Department of Health and Human Services (DHHS) met on Monday, April 4, 2005, to discuss disability in CFS, hear reports from federal agencies and receive testimony from members of the public. Dr. Charles Lapp chaired the meeting in the absence of committee chairman Dr. David Bell, who was unable to attend due to a death in the family. Dr. Lapp introduced the committee’s new executive secretary, Dr. Howard Zucker. He replaces Dr. Larry Fields as deputy assistant secretary for health. Dr. Zucker, a physician trained in pediatric cardiology and anesthesiology, also holds a law degree. In addressing the committee Dr. Zucker stated that there is no one who doesn’t know someone with CFS now, and that he would endeavor to bring problems to the surface, as well as identify and implement solutions. He noted that CFS affects all aspects of an individual’s life, and that the illness takes a great toll on families and society. He promised to shepherd the committee’s recommendations and to effect positive change.

Dr. Lapp brought to the committee’s attention the need for nominations of new committee members, as published in the Federal Register. Six members of the committee have terms that will expire on September 30, 2005.* Nomination packages must be submitted to Dr. Zucker by April 20, 2005. Details on how to make nominations are available at http://www.cfids.org/advocacy/2005/gac_03172005.asp. This will be the first change in the committee’s membership since it was constituted in 2002.

Discussion then turned to the central topic of the meeting—disability in CFS. Dr. Lapp opened with a review of various definitions used in medical and legal settings to denote changes in “normal” function and health. In a presentation he titled “Taming of the Screw,” he provided an overview of the various benefit programs that persons disabled by CFS may have access to (depending upon employment status and other factors), including short-term medical leave, workman’s compensation, the Family Medical Leave Act, short-term disability, long-term disability (LTD), Social Security Disability Income (SSDI) and Supplemental Security Income (SSI). His review of these programs and the various problems that CFS patients encounter when trying to access benefits was followed by attorney and committee member Lyle Lieberman’s remarks and presentations by two invited guest attorneys experienced in disability law. Kirk Wagar of Coconut Grove, Florida, limits his law practice to representing policyholders against insurance carriers. Mac Sasser of Charlotte, North Carolina, is a nationally recognized expert in disability law as well.

Common themes quickly emerged, focusing on the “delay and denial” tactics practiced by long-term disability insurers, the interplay between the determination of SSDI benefits and benefits awarded by private insurers. Also discussed were the limitations now regularly imposed by LTD carriers for disability related to “self-reported” conditions such as CFS, migraine and other pain syndromes, and for psychiatric illnesses. The multitude of problems resulting from ERISA, a law passed in 1974 that gives insurance companies broad authority for the administration of employee benefits programs, were covered as well. Comments highlighted the need for reform of this sweeping law that stacks the disability deck strongly in the insurer’s favor, although several committee members recognized that inducing such reform was beyond the committee’s scope. Potential recommendations centered on the review and updating of Social Security policy ruling 99-2p that provides guidelines for determining disability in CFS cases, education of physicians who treat CFS patients and must understand and document their patients’ impairments, and the education of law professionals, adjudicators and insurers about CFS. These issues, along with draft recommendations offered at the September 2004 and January 2005 meetings, will be revisited at the next meeting to arrive at a set of recommendations for Secretary of Health Mike Leavitt.

The afternoon session was dedicated to agency updates and a presentation by the Centers for Disease Control and Prevention’s Dr. William Reeves on research activities related to adolescents with CFS, which was requested by committee chairman Dr. David Bell at the January 7 meeting. Dr. Reeves reviewed various surveillance studies conducted by CDC from 1992 on, all of which found rates of CFS in adolescents that were substantially lower than adults in the same studies. None of the studies identified children under the age of 12 who met the case definition. CDC will include adolescents in its current study of CFS being conducted in three regions of Georgia and will also enroll adolescent patients in the pilot registry it will launch in Georgia in the coming months. Dr. Reeves acknowledged that although there appears to be less risk of CFS in adolescents as compared to adults, there are several things about the illness in this younger population that have not been well studied. The short- and long-term impact on kids, whether the core symptoms are the same as adults or slightly different, risk factors for adolescents, utilization of health care by younger patients and efficacious treatments for kids all warrant greater investigation. Dr. Reeves noted that CDC will include samples from adolescents in its genomics and proteomics studies.

Reporting for the National Institutes of Health (NIH), Dr. Terry Hoffeld announced the publication of proceedings from the NIH’s June 2003 conference on neuroimmune mechanisms in CFS and reported that the number of CFS grants submitted for the next review cycle was three times that of the just-completed review. He also stated that the NIH was still working with various institutes to develop a special Request for Applications with its own set-aside funds to stimulate research interest in CFS.

Public witnesses providing testimony included Rebecca Artmann, Beverly Boudros and Mary Schweitzer. They addressed disability issues and related concerns such as name change and physician education. Before concluding the session Dr. Lapp suggested the committee meet next on June 27 and September 26, with confirmation of such dates to follow by e-mail. In addition to a review of proposed recommendations and the Social Security ruling, Dr. Reeves was asked to report on CDC’s education activities at the next meeting. Dr. Zucker thanked the committee for its guidance on these important issues and the meeting was adjourned.

For more information about the CFSAC, please visit http://www.cfids.org/advocacy/CFSAC.asp.

* Members whose terms expire on September 30, 2005: David Bell, M.D.; Nancy Butler; Nelson Gantz, M.D.; Charles Lapp, M.D.; Lyle Lieberman, J.D.; and Roberto Patarca, M.D.