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Your CFIDS Public Policy Report
Lobby Day attracts biggest group
On March 21, The CFIDS Association of America conducted its
11th annual Lobby Day in Washington, D.C. Seventy-two advocates, representing 15
states, met with more than 70 congressional offices, requesting increased
research funding and attention to federal activities that will boost awareness
and recognition for CFIDS.
This year’s group of advocates was the largest
in Lobby Day history. Of particular note, nearly half the participants were
healthy family members and/or friends of people with CFIDS (PWCs). Some
participants came with an ill loved one; others came in place of a spouse,
child, cousin or friend too ill to make the trip. For many years there were only
a few healthy participants. This year, they helped carry the message of CFIDS to
Capitol Hill, sharing a helpful perspective on how CFIDS affects families and
the individual. The entire advocacy effort was strengthened by a group of this
size and diverse composition.
Now the work of following up on commitments
made by congressional staffers and members begins. Support for the Association’s
requests was generally quite strong. Several staffers related personal knowledge
of CFIDS through friends, family or co-workers, adding to their interest in
helping push the requests through the lengthy appropriations (funding) process.
Such contacts can prove invaluable in generating and sustaining support for
increased research funding amid popular priorities for homeland security and
The Association is deeply grateful for this year’s —and
past years’ — Lobby Day participants. Their articulate delivery of the requests
and credible portrayal of the impact of CFIDS leave a powerful impression on
those who have the ability to significantly aid all PWCs.
Participants in Lobby Day 2002 made four specific requests
of their elected officials:
1) The Department
of Health and Human Services’ CFS Coordinating Committee (CFSCC) has not met
in 16 months. The CFSCC has led efforts to monitor, improve and avoid
duplication in government CFIDS programs. More than a year ago, DHHS announced
its intention to make the CFSCC a full advisory committee, yet DHHS has still
not approved the committee’s charter or announced a nomination
CFIDS Association asks Members of Congress to direct the Department of Health
and Human Services to: approve the CFS Advisory Committee Charter; publish a
call for nominations; install members; and hold one meeting, all prior to the
end of calendar year 2002.
2) With $12.9
million restored to the CFIDS program after the 1995–98 diversion of funds,
the U.S. Centers for Disease Control and Preven-tion (CDC) is branching into
new and important areas of CFIDS research and medical education. To date,
approximately half of the restored funds have been used, with only 18 months
remaining in the payback period. We are concerned that the President’s
proposed 6.5 percent cut in CDC’s budget, combined with the emphasis on
homeland security research activities, may stall the agency’s important CFIDS
CFIDS Association asks Congress to direct CDC to provide sufficient funding,
including funds allocated through the “payback” program, to accelerate its CFIDS
research plan to identify the causes, risk factors, diagnostic markers and
natural history of CFIDS; to create a CFS patient registry; and to educate
health care providers about the detection, diagnosis and management of CFS. We
also ask that CDC extend the “payback” period by one year (through FY’04) so
that the agency uses its funds most effectively, rather than risk careless
spending to comply with the previous deadline.
Institutes of Health (NIH) funding for CFIDS research has declined since 1995,
despite the fact that NIH has benefited from generous budget increases aimed
toward doubling its budget.
CFIDS Association requests that Congress direct NIH to target $10 million in
grants to focus on promising areas of CFIDS research, such as efforts to
understand the cause and progression of CFIDS, identify diagnostic markers and
focus on pediatric CFIDS, by funding both multidisciplinary CFIDS research
centers and investigator-initiated studies.
patients’ most crucial need is for effective, compassionate medical care. The
Health Resources and Services Administration (HRSA) has supported
demonstration grants to find new, more effective ways of health care delivery
for emerging illnesses, although it has not yet done so for CFIDS.
CFIDS Association requests that Congress direct HRSA to provide demonstration
grants to develop model clinical centers with the goal of optimizing and
delivering effective, multidisciplinary clinical care to persons with