The Appropriations Committee report accompanying the House version
of the appropriations bill that funds the NIH makes it clear that
Congress is reluctant to tell the Director of NIH how much money to
allocate to what disease. A sub-section of the report headed
"Balance in the research portfolio" states:
"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....
"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."
This means no Udall provisions for PD.
"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."
In other words, NIH should proceed as it always has.
However, the NIH is to also implement some of the measures
recommended by the recently released Institute of Medicine report
"Scientific Opportunities and Public Needs", which Congress had
requested the IOM to produce.
"The Institute of Medicine (IOM) recently released its report on
Improving Priority Setting and Public Input at the National
Institutes of Health. The study was conducted to examine how NIH
decides what to fund, what mechanisms exist for public input into the
process, and the role of Congress in directing the allocation of
funding among areas of research. The report includes 12
recommendations, many of which could be implemented through
administrative action. The Committee urges the Director to begin the
process of implementing those recommendations that do not take
legislative action as soon as possible. In addition, the Committee
requests a report on the status of implementing all the
recommendations by December 31, 1998."
This report can be viewed or downloaded via the National Academy of
Science website www.nas.edu from their on-line library. The
particular recommendations to be implemented are not specified.
Apparently NIH again has the choice. Not taking legislative action
to me means not requiring additional funds. That might exclude, for
example, recommendation 3 ("strengthen ... analysis and use of
health data, and of data on the impact of research on the health of
the public") and recommendations 7 and 8 ("establish an Office of
Public Liaison" and "establish and staff a Council of Public
Representatives"). It ought to include recommendation 9 ("public
membership of NIH policy and program advisory groups should be
elected to represent a broad range of public constituencies"), but
here again NIH seems to have the choice -- of whom to elect.
The IOM study as originally requested by Senators Frist and Coats
was expected to provide policy guidance to deal with what is
perceived as a conflict between the idea of scientists, who know the
scientific details, dependencies, opportunities and limitations,
deciding on what to reseach vs. the political demands of taxpayers,
who foot the bill for research, seeking near-term relief from the
specific diseases they suffer from. Although the uncertainties of
floor debates and possible amendments are still ahead, it appears
that so far Congress has chosen to defer to the scientists.
Has the issue been framed appropriately?
Phil Tompkins
Hoboken NJ
60/9
