"earmark" funds for specific diseases "deform" science"

[Margaret Tuchman <mtuchman@xxxxxxxxxxxxx>]

<>

             NATURE,  March 12,  1998

                         NIH's way of setting priorities endorsed
              Washington. An expert panel charged with deciding whether the US
              National Institutes of Health (NIH) should change the way it sets
research
              priorities heard general praise for the agency's methods last
week, and
              seemed averse to recommending dramatic changes when it reports in
July.

              Last week's meeting marked the launch of a study by the Institute
of
              Medicine (IOM) into whether the way in which the NIH sets
priorities for
              distributing its $13.65 billion - and growing - budget should be
changed,
              honed or left alone.

              Judging from the tenor of the meeting, the committee is more
likely to
              recommend incremental reforms than a dramatic overhaul. "We're
not
              dealing with something that's broken," says Leon Rosenberg, a
professor of
              molecular biology at Princeton University who chairs the
20-member panel.
              "We're looking for ways to make a good thing better."

              NIH directors who addressed the panel suggested one way that
might be
              achieved: by Congress ceasing to burden the agency with legal
requirements
              to spend money on particular diseases. Such constraints "deform"
science,
              they said.

              The $338,000 IOM study was ordered last year by Congress. It was
              prompted by the perennial tug of war between the scientific
community,
              which prefers a free hand in deciding how it spends research
dollars, and
              advocates for dozens of diseases, who argue that their causes are
              underfunded by NIH in a process that excludes the public.

              Both sides have support in Congress. Last week Representative
John Porter
              (Republican, Illinois) took Donna Shalala, the secretary of the
Department of
              Health and Human Services, to task for what he alleged was White
House
              meddling in NIH priority-setting. President Bill Clinton "is
setting one disease
              against another" by seeking in his 1999 budget a five-year, 65
per cent
              increase in cancer research spending at the NIH, said Porter.

              Porter, who chairs the House of Representatives appropriations
              subcommittee that funds the NIH, said Clinton had opened "a
Pandora's
              box" with the proposal. Shalala defended the proposed increase as
"not
              inappropriate" because, during the same five- year period,
overall NIH
              spending would increase by 48 per cent. She said "cancer is on
the cusp of a
              series of major breakthroughs and this additional investment will
make a
              major difference in the quality of life".

              The issue is also coming to a head this year because of the
concerns of
              Senator Bill Frist (Republican, Tennessee), a medical doctor who
chairs the
              subcommittee on public health and safety of the Senate Labor and
Human
              Resources Committee, and who is responsible for drafting a large
              "reauthorization" bill for the NIH.

              The bill will set broad directions for NIH's work over several
years. Frist
              wants to use the IOM study to explain to Congress how NIH reaches
its
              decisions. In general he opposes attempts to direct NIH to spend
specific
              sums on research on specific diseases.

              Frist's aide Anne Phelps told the IOM panel that "the whole
impetus for the
              study" is to have a "process in place" against which to examine
proposals for
              specific disease spending by members of Congress "other than
debate on the
              Senate floor".

              Phelps added that, with broad congressional support for doubling
the NIH
              budget over five to ten years, Frist is feeling pressure from
disease advocacy
              groups and their congressional supporters. She expressed a worry
that
              members of Congress will pick five or six areas of research
emphasis in the
              reauthorization bill. "We are very concerned about what will be
missing."

              There was praise for Harold Varmus, the NIH director, from Adam
              Yarmolinsky, a panel member who is a professor of public policy
at the
              University of Maryland. He told Varmus at the meeting that he was
doing a
              "superior" job of prioritizing.

              Yarmolinsky suggested that NIH does not need the panel's "ideas
about
              how to prioritize better," but rather its advice on how to
justify the agency's
              decisions to the public.

              Varmus asked the panel to consider whether there should be ways
to make
              "more radical changes", having effects as big as fusing
institutes or halving
              institutes' budgets. Although such drastic measures are
"impossible
              politically", he said, the panel could consider other ways of
achieving change
              if it did not think the changes NIH makes from year to year are
"big enough".

              On the issue of NIH responsiveness to the public, Varmus said he
has
              learned "a lot" from highly educated disease advocacy groups. But
he added:
              "There is a point beyond which the decision has to be reserved"
for agency
              officials.

              The institute directors who addressed the panel rallied around
the current
              NIH process. Priority setting "is a complicated process, but you
want it to
              be," said Francis Collins, director of the National Human Genome
Research
              Institute. He likened any dramatically simpler scheme to landing
a 747
              aeroplane with a "joystick".

              The directors warned against Congress earmarking research funds.
Steven
              Hyman, director of the National Institute of Mental Health, said
that a
              congressional requirement to devote 15 per cent of research
spending to
              health services research, "lost [us] a substantial percentage of
our basic
              neuroscience portfolio. People simply went away." Earmarking
"entrenches
              self-interested constituencies" and "deforms" science, Hyman
added.

              But all the directors conceded an important role for public input
into the NIH
              process. John Alderete, a panel member who is a professor of
microbiology
              at the University of Texas Health Science Center at San Antonio,
said NIH
              needs to be more responsive to the public if it wishes to avoid
earmarking of
              funds.

              Meredith Wadman



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