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by Source: Healthwatch
January 1, 1999
The House of Representatives Appropriations Committee passed its fiscal year 1999 Labor, Heath and Human Services and Education Appropriations bill on July 14. The bill included directives for CFIDS and many other diseases. The entire House of Represenatatives should vote on the bill in September, following the summer recess. The Senate is also expected to take up its version of the bill in September. Any differences will be ironed out in the House-Senate Conference, which should take place prior to the end of the fiscal year on September 30.
National Institutes of Health: Balance in the research portfolio:
The Committee believes that NIH should distribute funding on the basis of scientific opportunity. As a result the Committee has allocated the Institute appropriations consistent with the distribution recommended by NIH and reflecting the Director's judgment of scientific opportunity. If NIH believes that adjustments to this allocation are necessary as the fiscal year 1999 appropriations bill moves through the legislative cycle, the Committee would be pleased to consider them in later action on the bill.
To enhance NIH's flexibility to allocate funding based on scientific opportunity, the Committee has attempted to minimize the amount of direction provided in the report accompanying the bill. For example, there are no directives to fund particular research mechanisms, such as centers or requests for applications, or specific amounts of funding for particular diseases.
In stating that scientific opportunity should be the basis for allocating research funding, the Committee understands that other factors also are relevant to NIH's decisions, including such considerations as the infectious nature of a disease, the number of cases and deaths associated with a particular disease, the Federal and other costs of treating a disease, the years of productive life lost due to a particular disease, and the estimated proximity to research breakthroughs. The Committee does not presume to judge which criteria should take precedence or carry the greatest weight in individual funding decisions, but urges NIH to consider the full array of relevant criteria as it constructs its research portfolio.
NIH Office of the Director:
Chronic fatigue immune dysfunction syndrome:
The Committee urges the Director to enhance efforts to focus on promising areas of Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) research, particularly those investigations which will define the pathophysiology of the illness and identify diagnostic makers. The Committee urges NIH to use all available mechanisms, as appropriate, including program announcements, to study all facets of pediatric CFIDS. The Committee also urges NIH Officials to identify appropriate NIH advisory committees for CFIDS representation and ensure appointment of qualified persons thereon.
Centers for Disease Control and Prevention (CDC):
The Committee encourages the CDC to enhance its chronic fatigue syndrome (CFS) laboratory studies and surveillance projects including outreach to minorities, children and adolescents. The Committee is concerned about the delay in appointing a neuroendocrinologist to the CFS research group as recommended by the Committee in the fiscal year 1998 report.
Health Resource Services Administration (HRSA):
The Committee urges HRSA to develop a training curriculum for health care providers in practice and providers in training through the AHEC program, especially programs directed toward educating primary care providers to improve the detection, diagnosis, treatment, and management of CFIDS patients.
Social Security Administration (SSA):
The Committee remains extremely concerned that individuals with Chronic Fatigue Syndrome (CFS) regularly encounter SSA employees who are unfamiliar with or misinformed about CFS, its diagnosis and the functional limitations the illness imposes. The Committee reiterates its intention that SSA develop and implement appropriate training agendas and materials for SSA and Disability Determination Service employees and that SSA establish an internal CFS advisory committee. The Committee directs SSA to expedite efforts to investigate obstacles to benefit eligibility for persons with CFS and to maintain updated medical information throughout all levels of the application and review process.
Department of Health and Human Services (DHHS):
DHHS Office of the Secretary:
The Committee requests that the Secretary continue the Chronic Fatigue Syndrome Interagency Coordinating Committee (CFSCC) beyond its expiration in 1998. The Committee urges the CFSCC to coordinate CFIDS research across the Public Health Service by defining priorities and creating a yearly action plan.
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