NIH & Specific disease lobbying

[Margaret Tuchman <mtuchman@xxxxxxxxxxxxx>]

<>

           NATURE,   2 April 1998

                    Ageing population of voters backs Alzheimer's funding
              Washington. Groups intent on securing increases in US research
funding for
              particular diseases have recently intensified campaigns in
Washington DC in
              the hope of substantially increasing their shares of the generous
1999 budget
              increase proposed for the National Institutes of Health (NIH).

              Many have been using well-known personalities to present their
case, and
              are countering warnings from the scientific community that such
lobbying
              distorts research priorities with appeals both to scientific
opportunity and to
              the economic incentives to target diseases that will affect
increasingly large
              numbers of an ageing population.

              The Alzheimer's Association, for example, wants an extra $100
million  a
              28.6 per cent increase  in funding for the disease. This was the
subject of a
              hearing convened by Senator Arlen Specter (Republican,
Pennsylvania) last
              week which featured, among others, the actress Piper Laurie.
Specter chairs
              the subcommittee that writes the bill that funds NIH.

              Similarly, advocates for people with Parkinson's disease
including former
              heavyweight boxer Muhammad Ali, who suffers from the disease
made
              their case to the health and environment subcommittee of the
House of
              Representatives Commerce Committee, which writes occasional bills
setting
              the broad direction for NIH.

              They insisted that doubling the funding for research into
Parkinson's disease
              is essential for adequately exploiting research opportunities.
They also
              argued that Congress is legally bound to produce the funds under
a law
              passed last year calling for $100 million in new Parkinson's
money over each
              of the next three years, as it had not provided the money (see
Nature 389,
              112; 1997).

              The flurry of lobbying comes as Congress sets about drafting
spending bills
              that promise to give the NIH an increase of at least 8.4 per
cent, to $14.8
              billion, and perhaps even more. It also comes on the heels of
strong
              objections from NIH directors to congressional interference in
research
              funding.

              The directors told a panel convened by the Institute of Medicine
last month
              that efforts by Congress to "earmark" funds for specific diseases
"deform"
              science and, when permanent, are even "lethal" to the research
enterprise
              (see Nature 392,116; 1998).

              Such pleas, however, do not always prevail with politicians who
may draw
              on personal experience of family or friends crippled by diseases.
For
              instance, Paul Wellstone (Democrat, Minnesota), a leading backer
of
              increased Parkinson's funding, saw both his parents suffer with
the disease.

              And Newt Gingrich, the Speaker of the House of Representatives,
whose
              mother-in-law has diabetes, wrote a $150 million increase in
spending on
              juvenile diabetes research into the balanced budget law last year
(see Nature
              388, 617; 1997).

              Richard Hodes, the director of the National Institute on Aging,
which funds
              about three-quarters of NIH Alzheimer's research, says the new
money
              could "very definitely" be spent on first-rate science, and that
the ageing of
              the US population presents a "time imperative" for accelerating
the research.
              Steven Hyman, director of the National Institute of Mental
Health, which
              plans to spend $28 million on Alzheimer's in 1999, says the field
has
              "immense opportunity".

              But both men argue against the Alzheimer's Association's attempts
to
              increase research spending by 28.6 per cent. (The budget that
President Bill
              Clinton sent to the Congress in February would increase it by 7.4
per cent,
              to $375 million.)

              Hodes says that "scientific planning and scientific resource
setting", not
              Congress, should determine how the NIH spends its money. And
Hyman
              argues that if Congress were to allocate an extra $100 million
for
              Alzheimer's without increasing the entire NIH budget by the same
amount, it
              would force the NIH to raid accounts for other diseases, and
"might actually
              draw money from better to less worthy science".

              But in a country where 14 million people are expected to succumb
to
              Alzheimer's when the baby boomers reach 65, politicians are hard
pressed
              to resist calls to target a costly disease. At last week's
hearing, Specter said
              the Alzheimer's Association's goal of $100 million in new funding
this year is
              "laudable". And Tom Harkin (Democrat, Iowa), the senior Democrat
on the
              subcommittee, urged advocates to put "maximum" pressure on
Congress to
              vote for the increased Alzheimer's spending.

              At the House of Representatives, the reaction from John Porter
(Republican,
              Illinois), the chairman of the subcommittee that funds the NIH,
was less
              encouraging. Porter said that, where the NIH was concerned,
political
              judgement was no substitute for scientific judgement.

              Meredith Wadman
----------------------------------------------------------------------------
-------------------------

NATURE, September 11, 1997

                      Parkinson's research may get spending increase
              Washington. The US Senate last week voted to increase spending on
              research into Parkinson's disease to $100 million next year, but
did not
              specify where the new funds would come from.

              The decision was passed with 93 votes in favour, and just 3
against. It was
              part of an amendment to a 1998 spending bill for the departments
of Labor,
              Health and Human Services and Education. The amendment was
offered by
              Paul Wellstone (Democrat, Minnesota) and John McCain (Republican,
              Arizona).

              The National Institutes of Health says it will spend about $81
million on
              Parkinson's-related research this year. Advocates for increased
funding insist
              that the amount now spent strictly on Parkinson's research is $32
million.

              Meanwhile, senators defeated, by a 60-38 vote , an amendment by
Dan
              Coats (Republican, Indiana) that would have prohibited use of the
funds for
              research involving fetal tissue from induced abortions.

              NIH officials have opposed earmarking money for research on
specific
              diseases like Parkinson's, arguing that this ties their hands in
responding to
              ever-unpredictable scientific developments.


mtuchman@xxxxxxxxxxxxx
DOB: 1941/Dx: 1980/Cured:ASAP
Slogans wont do it/Hard work will