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Your CFIDS Public Policy
With the world’s attention focused on the rebuilding effort in
and the spread of a deadly new infectious disease, Severe Acute Respiratory
Syndrome (SARS), The CFIDS Association of
America is working to ensure that the needs of people with
CFIDS are not forgotten by top health officials
and federal legislators.
Over the past three months, we have met with leaders of the
country’s two most important medical institutions: Dr. Julie Gerberding,
director of the Centers for Disease Control and Prevention (CDC) (meeting held
in Atlanta on March 11) and Dr.
Elias Zerhouni, director of the National Institutes of Health (NIH)
D.C., April 7). We also met with the two
Department of Health and Human Services (DHHS) staff members now in charge of
the CFS Advisory Committee, Dr. Larry Fields and Dr. Deb Nichols
D.C., Feb. 2). Here are updates based on
information obtained during these meetings.
Dr. Gerberding reiterated the commitment of
her agency to strengthening the CFS program being led by Dr. William Reeves, and
to fully restoring the CFIDS community’s trust
in CDC’s scientific approach to CFS and its financial management. As reported in
the winter 2003 issue of the Chronicle, CDC has dramatically expanded its CFS
research program to include cutting edge genomics and proteomics studies,
clinical investigations and promising collaborations with academic scientists.
CDC also provides funds to The CFIDS
Association of America to carry out provider education activities, through a
contract approved last fall.
We are already working with top CDC officials to maintain the
current level of funding — which includes “payback” funds arising from the
1995–1998 diversion of CFS funds to other programs — so that the gathering
scientific momentum is not lost when the payback period ends in 2004. Dr.
Gerberding and her staff agreed that productive research should not be put in
jeopardy, and that it is helpful to have agency officials and advocates working
together to overcome the budgetary challenges posed by this year’s funding
Having come to NIH in 2002 from
University, Dr. Zerhouni related his
experience working with his Hopkins
colleagues to evaluate CFS patients with autonomic nervous system abnormalities.
He recalled the extent of the impairment suffered by those patients and
expressed his view that complex, multi-system illnesses will require a new
medical paradigm to make progress in research and treatment.
He also cited the need for ongoing dialogue with researchers
from a wide variety disciplines to extend findings in sleep, pain, disability,
cognitive impairment and other illness dimensions in the CFS population. A
scientific workshop titled, “Neuro-Immune Mechanisms and CFS,” planned for
June 12–13, 2003, will
provide a forum for such
dialogue and will help shape future NIH efforts to encourage
research on the syndrome.
NIH funding for CFS research had been expected to decline in
FY03 as a result of fewer new grants being funded and the decision to end the
CFS Cooperative Research Centers program. However, Dr. Zerhouni reported that
the NIH will spend $7.2 million this year, up 16 percent from $6.2 million in
2002. We are presently analyzing the list of CFS grants that make up the NIH
research portfolio to ensure that all CFS-related grants are included in that
figure and to ascertain that all grants reported as being CFS-related are fully
relevant to building a stronger understanding of CFS.
Drs. Fields and Nichols presented an update
on their efforts to adhere to the federally prescribed process for assembling
the new CFS Advisory Committee. With 24 nomination packages to review and 11
committee positions to fill, they are working as quickly as possible to evaluate
candidates and develop a committee roster that reflects scientific diversity and
They have spent a great deal of time tracing the history of
federal efforts on CFS and learning the issues. Grinding through the
bureaucratic requirements should be the last hurdle before Fields and Nichols
launch the new CFS Advisory Committee in a productive direction.
The Association will hold its 12th annual
lobby day on Sept. 18, with a mandatory training session held on Sept. 17. We
welcome all advocates — people with CFIDS,
family and friends — to participate in this empowering event. For more
information or to register, send an email message to:
firstname.lastname@example.org, or call the Resource Line at 704-364-2343. Hope to
see you there!