Since May, when the Department of Health
and Human Services Inspector
General (IG) released its report finding that the Centers for Disease Control and Prevention (CDC) had
diverted CFIDS research funds and then lied to cover up the diversion, there has been intense public scrutiny
of the agency's handling of the situation.
The CFIDS Association has been a strong voice for restitution,
pushing hard for the CDC to restore the funds the CFS program has lost. In July, under intense pressure,
the CDC responded by admitting the misconduct that had jeopardized the agency's accountability, respect,
and integrity. Following is an update of what has occurred since the IG's report was released.
Appeal to Shalala
In June, Marc Iverson, Chairman
of The CFIDS Association, wrote to Donna Shalala, Secretary of the Department of Health and Human Services.
He expressed outrage at Koplan's initial response, which suggested that the diversion was justified because
the other disease areas that received the money marked for CFIDS were important, and pointed out that
each of those areas have their own multi-million dollar appropriations.
A telephone call
This strategy soon brought an unexpected response.
On July 14, CFIDS
Association executive director Kim Kenney received a surprising phone call-Dr. Jeffrey Koplan, Director
of the CDC, was on the line with a personal apology.
Koplan acknowledged the seriousness of the
situation during the call, and in a follow-up letter promised to "reinvigorate" the CDC's efforts to increase
its knowledge about CFS and invited The CFIDS Association to participate in establishing a long-term plan
for CFS research by the agency.
The CDC also issued an official statement in response to the ongoing
investigation that was given to CDC staff, members of Congress and The CFIDS Association (see box
on next page).
CFSCC continues fight
Fatigue Syndrome Coordinating Committee (CFSCC) and officials from the CDC and the IG's office gathered
in July for a special briefing to discuss the audit and make recommendations for how to resolve the situation
and prevent further mismanagement from occuring.
"Resources intended for CFS were actually used
for measles, polio and other disease areas. This was a breach of CDC's solemn trust and is in direct conflict
with its core values," said Martha Katz, Deputy Director for Policy and Legislation at CDC. Katz appeared
solemn and contrite at the meeting, and stated that CDC had taken this matter very seriously and that
Dr. Koplan had ordered "unprecedented" measures to rectify the wrongdoing. She confessed that CDC had
served the needs of people with CFS very badly.
After brief statements from Katz and IG senior
auditor Jeffrey Bullock, Committee members were invited to ask questions about the report and the CDC
response. Kim Kenney asked Bullock about the pattern of year-end transfers. He stated that it was clear
CDC used CFS research funds to "balance the books at the end of each fiscal year." He also acknowledged
that CDC administrators Dr. Brian Mahy and Dr. James Hughes were aware that they were providing inaccurate
spending information to upper management. Further questions about the IG's conclusions regarding scientific
bias at CDC or whether mismanagement was found in other CDC programs were met with vague answers from
Bullock. CDC officials denied that scientific bias against CFS was at the root of the problem.
asked about Dr. Koplan's "change of heart," reflected in the very different written responses he made
first to the IG's draft report and the letters and response presented to CFSCC members and individual
advocates. Katz replied that Dr. Koplan had conducted his own investigation and was convinced that stronger
measures were warranted.
Life at CDC post-scandal
During the CFSCC meeting, discussion
touched on whether anything has really changed in the agency to ensure that those "stronger measures"
will be successful. Questions about whether upper management had consulted the CFS program office before
preparing the final response revealed an alarming lack of communication.
Katz stated that Dr.
William Reeves, chief of the branch that studies CFS, had been involved in crafting the response. Dr.
Reeves, however, said he first saw the document when it was distributed by Dr. Mahy at a meeting
of branch chiefs, and had not been contacted by Koplan or any other member of upper management about the
report's findings or the allegations of fiscal mismanagement he made a year earlier. Reeves also reported
that since presenting evidence of misspending, he has experienced retaliatory actions from which he should
be protected by the federal "Whistleblower Act." He announced that he has filed a grievance with the Office
of Special Counsel to contest this treatment, which seemed to come as a surprise to the other officials
Seeking restitution of funds
CDC officials and Committee members also debated
the amount of funds that should be restored to the CFS program. CDC's response makes an unclear reference
to restoring "CFS program funds spent on other public health issues," which ties into the $8.8 million
in "unacceptable" charges detailed in the IG report. The CFIDS Association has insisted
that the full $12.9 million, which includes $4.1 million for which there was inadequate documentation,
While some argued that it is conceivable a portion of the undocumented expense could
have supported CFS research, Kenney pointed out that the $12.9 million figure was more than reasonable,
since ".if this were the IRS collecting back taxes, there would be penalties and interest charged. Or,
if it were a lawsuit, a figure for pain and suffering would be added."
Following the question
and answer session, Committee members made and unanimously passed several motions. The motions, which
will be sent to Secretary Shalala as formal recommendations, are as follows:
- To restore the full $12.9 million misused between FY '95-98 over
the course of fiscal years 2000, 2001, 2002 and 2003.
To require that the CDC's Office of the Director oversee the CFS
program's budget and implementation of these programs for the next four fiscal years and that the operating
plan and subsequent quarterly reports be given to Congress and shared with the CFSCC.
- To keep the CFS program within the Viral Exanthems and Herpesvirus
Branch of CDC while dialogue and plans for the future of the CFS program continue.
- To direct that restored funds be used for CFS public education programs
with an emphasis on general public service announcements and targeted efforts to educate primary care
providers about CFS.
To support a General Accounting Office study to expand the IG's
audit by conducting a thorough review of the track record and course of CFS research at the CDC and NIH;
to support continued monitoring by the IG; and to support plans for the Office of Management and Budget
to provide CDC with a separate allocation (to enhance accountability and oversight).
In addition, executive secretary Lillian
Abbey made a commitment
to consult with the Office of General Counsel about extending the Committee's authority, in response to
a recommendation made by member Aba Heiman. CDC promised to come to the November 2, 1999, meeting with
a draft plan for reinvigorating the CFS program that Committee members can critique.
are just the first steps to remedy this situation and will hopefully squash any further abuse of CFS research
by the CDC," Kenney said. Member Jerry Crum withheld opinion on the long-term outcome. "You don't call
'em a cowboy until you see 'em ride."
issue) for information on news coverage of the
D.C. Dispatch (this issue) for
an update on Congressional appropriation of new CFS research
CDC Response to Chronic
The Centers for Disease Control and Prevention (CDC) is a
health agency that relies upon the trust of the U.S. Congress and the American people to carry out its
many responsibilities. This trust is crucial to the agencyís effectiveness since its public health programs
are largely built upon voluntary partnerships and the cooperation of individuals, communities, health-care
practitioners and researchers. As a reflection of that foundation of trust, the agencyís three core values
are accountability, respect and integrity.
In August 1998, in response to allegations that funds
had been misspent, the Director of CDC requested the Department of Health and Human Services Office
of the Inspector General (OIG) to audit costs charged to the Chronic Fatigue Syndrome (CFS) Program. The
audit and resulting internal report, "Audit of Costs Charged to the Chronic Fatigue Syndrome Program at
the Centers for Disease Control and Prevention," concluded that CDC mismanaged CFS resources and provided
misleading information to Congress. Resources intended for CFS were actually used for measles, polio and
other disease areas.
This was a breach of CDCís solemn trust and is in direct conflict with its
core values. CDC is committed to restoring the trust of Congress and its state and national public health
partners and is moving aggressively to make the specific and agency-wide changes necessary to prevent
such mismanagement in the future. Concurrently, the agency is reinvigorating its efforts to better understand
CFS and its effects on the lives of those persons who must meet this health challenge on a daily basis.
findings of this report have been taken very seriously. To demonstrate and reinforce CDCís personal commitment
to addressing this matter, unprecedented actions are being taken that not only include all of the recommendations
of the OIG but go well beyond those recommendations. These actions include:
CDC is a valued agency with a long
and distinguished history of service
to the American people. Corrective actions, such as the ones described above, are the most far-reaching
in the half-century history of CDC. Staff from every CDC program will know of these actions.
have learned a valuable lesson through this experience, which will not be forgotten as we continue our
work to protect the publicís health.