On July 20, 2006, the Senate Appropriations Committee
approved the Labor, Health and Human Services, Education, and Related Agencies
spending bill for fiscal year 2007. The $605.6 billion spending bill includes
$142.8 billion in discretionary funding for the Departments of Labor, Health and
Human Services, and Education, as well as the Corporation for Public
Broadcasting and the Social Security Administration.
The Bill now goes to “conference” where differences with the
House of Representatives’ version of the spending measure get ironed out. If
passed by the full Congress, the bill goes to the President to be signed into
law. The Senate and House passed versions of the bill with substantive
differences and it could take until after the November elections to reach
agreement on a Bill that will win Congressional support.
The Senate bill
includes a report that provides direction to the agencies for specific uses of
appropriated funds. While the report does not have the force of law, it is
considered an important document by the agencies who must implement spending and
program priorities. The CFIDS
Association has taken steps to protect the CFS language, provided
below, when the bill goes to Conference after Congress’ summer recess.
Thanks to all who worked to ensure the Senate’s
recognition of expanded CFS research, education and care in the spending bill
for our nation’s health agencies.
Senate Appropriations Committee
FY2007 Labor, HHS, Education Spending Bill
Report
Directives for the Department of Health and Human
Services,
Social Security Administration and Department of
Education
regarding chronic fatigue syndrome
(As taken from the text of
the Senate spending bill under consideration)
Department of Health and Human Services, Office of the
Secretary
Chronic Fatigue.—The Committee appreciates the
work of the Department’s Chronic Fatigue Syndrome Advisory Committee [CFSAC].
However, the Committee is concerned that it took the Department almost one year
to appoint new members to replace in March 2006 the five CFSAC appointees whose
terms expired in September 2005. The Committee directs the Department to ensure
a timely nomination and appointment process to replace the remaining CFSAC
members whose terms will expire in 2006, and to ensure that the appointment
process does not disrupt the committee’s schedule of
meetings.
National Institutes of Health (NIH)
Chronic Fatigue Syndrome.—The Committee commends the NIH for the July 14, 2005,
request for applications [RFA] on CFS. The Committee supports the CFS Advisory
Committee’s recommendation to “establish five Centers of Excellence within the
United States that would effectively utilize state of the art knowledge
concerning the diagnosis, clinical management, treatment and clinical research
of persons with CFS.” The Committee notes that the recommendation includes
modeling the CFS centers after the existing Centers of Excellence program, with
funding in the range of $1,500,000 per center per year for 5 years. The
Committee has reviewed the Director’s July 2006 report on NIH Research
Activities on Chronic Fatigue Syndrome. The coding instructions for grants
appear insufficient and overly broad, allowing the inclusion of non-CFS-specific
studies. Thus, the Committee remains concerned that funds for CFS are not
reported appropriately. It is imperative that NIH improve its methods of
accounting for disease-specific research, consistent with recommendations from
the NIH’s Council of Public Representatives and the Institute of Medicine’s 2003
report, "Enhancing the Vitality of the NIH: Organizational Changes to Meet New
Challenges." Within 60 days of passage of this bill, the Committee requests the
NIH to work with the CFS Advisory Committee to refine its coding instructions
and revise its report to the Committee accordingly.
Centers for Disease Control
and Prevention (CDC)
Chronic Fatigue Syndrome.—With the
full restoration of $12,900,000 to the Chronic Fatigue Syndrome [CFS] research
program in response to a report from the Inspector General dated May 12, 1999,
the Committee commends CDC for developing a comprehensive CFS program that now
leads CFS research efforts worldwide. The Committee is encouraged by the
commitment of the CFS research team and the exciting progress it is making in
understanding the pathophysiology of CFS. The Committee encourages CDC to
provide sufficient resources to sustain this leadership and to protect the
progress made and has provided an additional $1,000,000 over the budget request
level to aid these efforts. The Committee is also concerned that the CDC
restructuring not undermine this momentum. The Committee requests a report by
May 1, 2007 that outlines how the restored funding was used and how the CDC
restructuring will affect CFS research. The Committee commends CDC on the joint
CDC/CFIDS Association of America national public education and awareness
campaign. The Committee is disappointed by the postponement of the campaign and
expects CDC to expedite the campaign and ensure that the intent and objectives
of the overall campaign, as originally envisioned, are achieved.
The Committee understands that emerging evidence
indicates that human herpesvirus 6A and Epstein-Barr virus may play a role in
CFS. The Committee encourages CDC to investigate the role that these viruses may
play, including as possible causative agents.
Health Resources and
Services Administration (HRSA)
The most crucial need
for individuals suffering from Chronic Fatigue Syndrome [CFS] is for effective,
compassionate medical care. Through its demonstration grants program, HRSA has
piloted effective ways of delivering health care services to those with emerging
illnesses. The Committee encourages HRSA to provide demonstration grants to
develop model CFS clinical centers with the goal of delivering effective,
multidisciplinary clinical care to persons with CFS.
Social Security
Administration (SSA)
The Committee encourages SSA officials
to educate adjudicators at all levels about the functional impact of CFS and the
application of the April 1999 CFS ruling (99–2p) to ensure that adjudicators
remain up to date on the evaluation of disability that results from this
condition. The Committee encourages SSA to examine obstacles to benefits for
persons with CFS and to keep medical information updated throughout all levels
of the application and review process.
Department of
Education
The Committee recommends $106,705,000 for the
National Institute on Disability and Rehabilitation Research [NIDRR]. The
comparable fiscal year 2006 funding level and the budget request both are
$106,705,000 for authorized activities. NIDRR develops and implements a
comprehensive and coordinated approach to the conduct of research, demonstration
projects, and related activities that enable persons with disabilities to better
function at work and in the community, including the training of persons who
provide rehabilitation services or who conduct rehabilitation research. The
Institute awards competitive grants to support research in federally designated
priority areas, including rehabilitation research and training centers,
rehabilitation engineering research centers, research and demonstration
projects, and dissemination and utilization projects. NIDRR also supports
field-initiated research projects, research training, and fellowships. The
Committee commends NIDRR for recognizing Chronic Fatigue Syndrome [CFS] as an
unmet area of research. The Committee encourages NIDRR to continue to pursue
CFS-related research proposals through its investigator-initiated and other
grants programs.
