Federal agency updates
The Department of Health and Human Services (DHHS s) Chronic Fatigue Syndrome Coordinating Committee (CFSCC) met Oct. 25 following the CFS State of the Science conference. DHHS official Dr. Nicole Lurie reported that DHHS supports increases in research funding for many diseases, including chronic fatigue and immune dysfunction syndrome (CFIDS).

She said that the CFSCC has made important contributions to increasing attention to and activity around CFIDS and that DHHS is interested in following up on the CFSCC's suggestion to produce a CFIDS public service announcement but needs guidance on the message and distribution channels.

Work groups were formed to develop a public service announcement on CFIDS and to explore improving clinical care of CFIDS patients, an issue that the CFSCC is following closely.

National Institutes of Health s (NIH s) Dr. Donna Dean announced that CFIDS funding had decreased in fiscal year 2000 after CFS researcher Dr. Stephen Straus was appointed Director of the National Center for Complementary and Alternative Medicine. She asked the CFIDS community for patience while NIH reorganizes its CFIDS program.

Charles Engel and Mark Brown of the Departments of Defense and Veterans Affairs, respectively, officially joined the CFSCC as liaison members. Both have a great interest in CFIDS and the CFSCC's activities, especially in promoting medical education and public awareness.

Carol Lavrich, chair of the Name Change Working Group (NCWG), reported that the group was seeking broader input on possible names but was hindered by the lack of a budget for its work, which might include conducting research on the impact of potential names. She asked the CFSCC to consider setting aside funding for the group's activities.

To contact the NCWG, e-mail: cfs@od.nih.gov (put "Name Change" in the subject line) or write to: DHHS CFSCC Name Change Working Group, c/o Janice C. Ramsden, NIH, 1 Center Dr., MSC 0159, Bldg. 1, Room 333, Bethesda, MD 20892-0159.

The NCWG's public session on Jan. 28 and the CFSCC meeting on Jan. 30, both in Seattle, will be reported on in the next Chronicle.

Congress passes bill
Congress passed its 2001 Labor, Health and Human Services, Education, and Related Agencies (L/HHS) Appropriations bill Dec.15, 12 weeks after the start of fiscal year 2001. This multibillion-dollar legislation funds all health and human services programs, including CFIDS research and activities. In addition to the usual directive language, CFIDS received a budget line item $7 million for research at the CDC.

Other congressional directions included increasing CFIDS research at CDC and NIH, educating Social Security Administration employees and school personnel about CFIDS, and developing a DHHS action plan. The Defense Appropriations Committee recommended funding for research on the neural mechanisms of CFIDS and provided $6 million to extend research on the link among Gulf War illness, CFIDS, fibromyalgia, and multiple chemical sensitivities.

Rep. Ralph Regula from Ohio will chair the House L/HHS appropriations subcommittee in the 107th Congress; the Senate has not yet announced Regula's counterpart.

New CDC audits
The General Accounting Office (GAO) released a report in November, "Centers for Disease Control and Prevention: Independent Accountants Identify Financial Management Weaknesses," that examined CDC's overall financial operations. The report follows the May 1999 Inspector General's finding that more than half the funds CDC reported to have spent on CFIDS were spent on other programs and that internal controls were lacking.

After extensive analysis, the GAO found that "CDC's financial management processes, procedures, systems, and capabilities have not kept pace with its expanding mission and funding growth" and that "financial management appears to be suffering from neglect and a lack of expert leadership." Recommended corrective actions "will require a long-term commitment and years of sustained effort throughout CDC," read the GAO report.
 
New rules help patients
New Department of Labor (DOL) regulations will protect the privacy of medical records and personal health information. The new standards, which will take affect January 2002, will require a patient's approval before medical records are shared with third parties. Patients also gained the right to see a copy of their medical records, request corrections to them, and find out who has access to them.

Another set of rules issued in November should speed group health and disability insurance decision-making when they take effect Jan. 1, 2002. DOL, which wrote the new rules, included suggestions from many groups, including The CFIDS Association.

Starting next year, insurance-related medical decisions must be made under the following time frames:  72 hours for urgently needed care, 15 days if preapproval is needed before medical care can begin, and 30 days for reimbursement of patient-paid care.

Disability decision makers must adhere to the following schedule: 45 days for an initial determination with the option of two 30-day extensions for reasons beyond the plan's control; and 45 days for appeals with the option of a 45-day extension. If a decision can't be made because the claimant must provide additional information, the deadline clock begins ticking once the date notice is sent to a claimant.

For all claims, the insurer will have to provide the scientific or clinical reason for denial of service or payment. Read the full text of the rule on the Web. (link currently not active)

Lobby Day in June
The CFIDS Association's annual Lobby Day has been changed from May 12, CFIDS Awareness Day, to June 20-21 in Washington, D.C. because Congress will be starting its work later than usual as a result of election delays.

For more information, write to the Association or send an e-mail to advocacy@cfids.org.

Vicki Walker is Research and Public Policy Project Manager for The CFIDS Association of America.