The D.C. Dispatch
CFIDS Public Policy Report
extraordinary Lobby Day
By Vicki C. Walker
May 12, 1999, was a day for the CFIDS history books. As CFIDS advocates around the country
awareness of CFIDS with activities ranging from wearing blue ribbons to hosting special events in their
communities, 67 of us were paying visits to 84 Congressional offices on Capitol Hill.
message decrying the federal government's inattention to CFIDS research was hammered home when, at noon,
the Department of Health and Human Services (DHHS) Inspector General (IG) released its report finding
that the Centers for Disease Control (CDC) had repeatedly diverted CFIDS research funds into other, unrelated
programs, and then lied to Congress and the American public about it. The members of Congress and their
aides with whom we met were outraged upon learning that, of $23.3 million reportedly spent by CDC on CFIDS
research, only $9.8 million actually went to study CFIDS.
Despite a clear message from Congress,
sent most vocally by Rep. John Porter, chairman of the committee which controls medical research spending,
the CDC still has not offered a satisfactory restitution plan. CDC Director Jeffery Koplan plans to implement
new accounting controls to prevent further abuse of the system, but he has not disciplined the CDC staff
responsible, nor has he offered to restore funds to the CFS research program. Representative Porter told
the Washington Post that he is talking with Dr. Koplan about steps to rectify the problem, saying,
"We have not agreed and the matter remains open."
The Association has spent much of the
intervening weeks following up on the release of the IG's report. A copy of the report was sent on May
17 to all the Congressmen we met with on Lobby Day. A press release and personal calls were made to hundreds
of media outlets around the country, resulting in coverage by The Washington Post, "Good Morning
America," FOX Network News, U.S. News and World Report and other media outlets (see page 5).
A C-ACT alert* was mailed to nearly 2,000 CFIDS activists on May 19, resulting in hundreds of letters
to Congress asking for compensation for the misspent funds. On June 16, CFIDS Association Chairman Marc
Iverson wrote to DHHS Secretary Donna Shalala demanding that the funds be restored, the offenders punished
and the CFS Coordinating Committee (CFSCC) permitted to make recommendations about an appropriate restitution
The CFSCC will meet on July 26 from 1-5 pm in Washington to hear reports from the
Inspector General and the CDC and to discuss restitution. While the meeting will be open to the public,
there will be no comment period for the public. The CFSCC's next regularly scheduled meeting, which will
include public testimony, will be Nov. 1-2.
On June 14, the General Accounting Office (GAO)
finally responded affirmatively to Sen. Harry Reid's Sept. 28, 1998, letter asking for a study on the
quality of CFIDS research and the impact of the diversion of funds. (The IG only audited CDC's books.)
The GAO waited to review the IG's findings before deciding whether to pursue its own, expanded study.
Sen. Reid's staff met with the GAO on June 22 to give them his and The CFIDS Association's wish list for
Other advocacy news
On May 10, CFIDS advocates Karen Lang, Joseph Lane
and I met with
staff from the Department of Education's National Institute on Disability and Rehabilitation Research
(NIDRR). The NIDRR staff brought with them a new grant announcement which included CFIDS as an example
of research it would like to fund. This was a direct result of a letter sent by The CFIDS Association
to NIDRR, asking the agency to consider funding CFIDS research. News of this new funding opportunity was
sent to over 2,600 CFIDS researchers and clinicians in May, and we are hopeful that we can soon add the
Department of Education to the list of federal agencies supporting CFIDS research. (We have created a
new E-mail list to notify researchers of new funding opportunities. For more information, see the website
or contact me at email@example.com.)
The CFIDS Association nominated two people to
CFSCC member Kristin Thorson, who resigned from the CFSCC in March. They are Jon Sterling, past president
of the New Jersey CFS Association, and Jan Montgomery, co-founder of the San Francisco CFIDS Foundation.
Secretary Shalala has not yet chosen a replacement for Mrs. Thorson. She also has not replaced Dr. Dedra
Buchwald or Jerry Crum, whose terms expired last autumn, but they continue to serve on the committee in
- The planning team for the physician education program co-sponsored by The CFIDS Association and the
Illinois Area Health Education Program met in Charlotte May 21-22. The committee will next meet in Chicago
in September and expects to complete work this year on a curriculum for training health care practitioners
about the diagnosis and management of CFIDS.
- Progress is being made on a mailing to the 1,000 Community and Migrant Health Centers across America.
Marilyn Gaston, MD, Assistant Surgeon General and Director of the Bureau of Primary Health Care in the
Health Resources and Services Administration, will send a letter describing the seriousness and prevalence
of CFIDS, along with literature from CDC, NIH and The CFIDS Association of America, to each of these Centers,
which primarily serve low-income patients.
The CFIDS Association has submitted a request for the Agency for Health Care Policy
(AHCPR) to issue evidence-based guidelines for the diagnosis and management of CFIDS. In addition to asking
AHCPR to review current treatment methods, we are also requesting that they offer guidance on the quality
of the treatment research and the confidence with which they can recommend a particular treatment, based
on variables such as the number of people studied and the outcome measures used.
The Work Incentives Improvement Act, which may allow
Security beneficiaries to keep their government health insurance after returning to work, passed the Senate
on June 16. A vote on the legislation has not yet been scheduled in the House. This, coupled with SSA's
increase in the maximum monthly earnings a disabled beneficiary can earn (from $500 to $700 per month),
may help reduce two of the primary barriers that cause disabled people to avoid trying to return to work.
Vicki Walker is Public Policy Coordinator for The CFIDS Association of America.
She is in her seventh
year of service to the Association.
* To join C-ACT, the Associationís free CFIDS advocacy group, visit the web site
or send your name, mailing address, phone number and e-mail address (if applicable) to: C-ACT, The CFIDS
Association of America, PO Box 220398, Charlotte, NC 28222-0398.