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Your CFIDS Public Policy
The Association has been
following up on contacts made during Lobby Day and with health agencies that are
planning new research initiatives. While not all the news is good, there is
reason to expect that the coming months may bring a stronger sense of commitment
and progress from the federal government.
NIH centers program.
In 1993, Congress directed the National
Institutes of Health (NIH) to fund cooperative research centers for
CFIDS . This program has been in place since
that time, with three centers currently housed at University of Medicine and
Dentistry of New Jersey (under Benjamin Natelson, MD), University of Washington
(Dedra Buchwald, MD) and University of Miami (Nancy Klimas, MD). These centers
have been funded by the National Institutes of Allergy and Infectious Diseases
(NIAID), the former “home” for
CFIDS studies at
With the expansion of
CFIDS research into
other fields and the office of the NIH director leading efforts to draw interest
from many research disciplines, the NIAID Council decided on May 28 to close the
centers program and use $1 million (half the amount spent annually on center
grants) to fund the most promising research applications.
The decision came despite opposition from the Association, which has long
supported the centers program. Prior to the Council meeting, the Association
contacted numerous NIH officials and friends on Capitol Hill, attempting to save
the program. Although the Council declined to fund the centers, approval was
given for the $1 million transfer to be made for each of the next five years,
and for NIAID to utilize a special “select pay” program for
grants that might otherwise go unfunded.
The Association has met with NIH staff to pursue other ways to boost
CFIDS research, and a newly
reconstituted NIH working group is interested in conducting outreach to the
larger research community. For the short-term, though, NIH funding will slide to
perhaps the lowest level in the past decade. This is particularly devastating
given the enormous increase in NIH’s overall budget.
CFS Coordinating Committee.
Top officials at the Department of
Health and Human Services (HHS) are looking at restructuring some of the
260-plus advisory committees that report to Secretary for Health Tommy Thompson.
Caught in this review is the planned advisory committee for
CFIDS that was announced 18 months ago but
stalled due to the change of administration and competing national priorities
following Sept. 11. In part, this latest review stems from the addition of new
committees to address domestic security and bioterrorism.
The Association has forcefully expressed outrage about the serious delay in
action on the committee, and now the possible abandonment of the promised full
advisory committee. We have discussed with HHS officials several alternatives to
the full advisory committee structure that was initially recommended by the
General Accounting Office.
Our priorities are to ensure that the committee is vested with appropriate
authority to advance CFS policy, to secure top-level DHHS leadership and to
mandate adequate representation of related agencies and community stakeholders —
particularly patient advocates. Also important is ensuring that whatever body is
formed has the necessary statutory support to continue beyond personnel and
other changes within the administration.
We are determined not to allow this restructuring effort to derail important
progress made through the earlier coordinating committee. We will continue to
work with DHHS staff to form a committee that will strengthen federal efforts to