Dear everybody who is concerned,
I ask these questions out of innocence and ignorance, because I don't
know the inner workings of the NIH, but, how do we know what money goes
where? Do they issue some kind of financial report? Are they ever
audited by some government or other authority. And who within the actual
NIH decides on how the money is allocated? Are there committees? And if
so, who serves on these committees? Do you need special qualifications?
Hilary Blue
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Phil Tompkins wrote:
>
> 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
