The following article appeared in the April 18, 1997 issue
of the Chronicle of Higher Education:

"Lawmakers Push NIH to Spend More on the Most-Prevalent Diseases"
by Paulette V. Walker
                                   Washington

  Norma Udall, standing before a poster-sized picture of her
husband, described in painstaking detail the toll that
Parkinson's disease had taken on the former Arizona Congressman.
Morris K. Udall served for 30 years in the House of
Representatives before falling ill in 1991, and he has been
hospitalized ever since.
  She was followed to the podium at a press conference here last
week by several people afflicted with the disease, she described
the uncontrollable shakes and the loss of mobility and speech
that characterize it. Also speaking was Senator Paul Wellstone, a
Minnesota Democrat whose parents both died of complications
related to Parkinson's.
  Describing his quest as a "labor of love," Senator Wellstone
vowed to "press and press and press, hard" for passage of a bill
named for Mr. Udall. The legislation would require the National
Institutes of Health to spend at least $100 million a year on
research on Parkinson's. The agency plans to spend $34 million
this year.
  Lawmakers, spurred by personal experiences or by intensive
lobbying from advocacy groups for people with certain diseases,
often have directed the NIH to spend a portion of its annual
appropriations on specific ailments. In the past, such earmarked
funds have accounted for significant spending increases for
research on prostate cancer and AIDS, among other disease.

OPPOSITION IN CONGRESS
  Some members of Congress, including Representative John E.
Porter, have campaigned to end this practice, arguing that the
scientists at NIH are best qualified to make those decisions. Mr.
Porter, an Illinois Republican, is chairman of the House
Appropriations subcommittee responsible for setting the agency's
budget.
  But many lobbyists for specific diseases, along with some of
Mr. Porter's colleagues, worry that NIH officials don't put
enough emphasis on the prevalence of a particular disease, or its
cost to society, in deciding where to invest its money.
  For instance, NIH spending on AIDS research in 1997 will amount
to $2,403 for each person in the U.S. infected with HIV, the
virus that causes the disease. By comparison, on Parkinsons
research the agency will spend $34 per person.
  Next month, the director of the NIH, Harold E. Varmus, is due
to submit a report to Congress, explaining how the agency sets
its priorities. Mr. Porter's panel will hold a hearing on the
subject.
  "I know that Congress wants to avoid earmarking, and I dont
want to go that route either," says Representative Ernest J.
Istook, a Republican from Oklahoma and a member of Mr. Porter's
panel. "But NIH has shown a total unwillingness to consider
common-sense factors. We need to find a way to make sure that
they are injecting into their process considerations for
prevalence and health-care costs. AIDS is a horrible disease, but
it does not cause near as much suffering to near as many people
as cancer or diabetes or a host of other, under funded diseases."
   During appropriations hearings this year, Dr. Varmus assured
lawmakers that NIH officials take those factors into account in
dividing up funds. But "scientific opportunities and the
availability of applications to study certain questions" are
significant factors, he said.

GENES LINKED TO DIABETES
  Research on one disease often produces discoveries for another,
he added. Last December, while studying how genes work,
scientists at the University of Chicago discovered two genes that
are linked to diabetes. Previously, neither gene had been thought
to play a role in the disease.
  "So what counts here is the way in which we exploit
discoveries" like that one, Dr. Varmus said.
  Such explanations do not comfort lobbyists for research on
specific diseases, many of whom suffer from those diseases.
 "I understand and agree that scientists need to pursue basic
science, and that not everything can be attributed to a specific
disease," says Sharon L. Monsky, who has scleroderma, a disorder
that leads to overproduction of collagen in body tissue, causing
the skin to harder. Ten years ago, she founded the Scleroderma
Research Foundation. "But federal research dollars are dwindling,
and the disparity will only get worse. Earmarking may not be the
answer, but Congress and science need to be more responsive to
the health concerns in our country."
  In fiscal 1996 and 197, the NIH received substantial increases
in its appropriations. President Clintons proposed budget for
fiscal 1998, however, would increase the agencys budget by only
2.6 per cent to $13.1 billion from $12.7 billion.
  Representative Porter and Senator Arlen Specter, Republican
from Pennsylvania who is in charge of the Senate Appropriations
subcommittee that develops the agency's budget, have promised to
fight for at least a 7.5 percent increase.
  "It will not be easy to craft a bill with the kinds of
increases the NIH deserves," given the demands for funds for
education, which come out of the same part of the federal budget,
Mr. Porter says. But having Congress make more earmarks for
research on specific diseases is not the answer, he says.
  The Office of AIDS Research at the NIH is a good example of the
hazards of earmarking, he says. In fiscal 1995, his committee not
only directed the NIH to spend $1.3 billion on AIDS research, but
also indicated specifically how much of that total should be
given to each institute within the agency. Mr. Porter says the
earmarking tied the hands of NIH officials, preventing them from
capitalizing on scientific opportunities.
  In fiscal 1996, his committee declined to set a specific amount
to be spent on AIDS research and instead gave Dr. Varmus and
William E. Paul, director of the AIDS office, the authority to
decide how much money each institute should get for the purpose.
This year, lawmakers went further, allowing Dr. Varmus and Dr.
Paul to shift up to 3 per cent of the NIH's total AIDS funds
among the institutes during the year to capitalize on research
opportunities.
  Lawrence S. Hoffheimer, a lobbyist for the National Parkinson
Foundation, disagrees with the approach of Mr. Porter and Dr.
Varmus. "The folks at NIH are acting like the benevolent
dictator, saying, "Scientists know what's best," he argues. "I
suspect Congress is shying from earmarks because they don't want
to have to say No" to the supporters of specific diseases.

'NEEDS THAT HAVE TO BE MET'
  "The bottom line is that there may be fewer dollars to go
around, but our patients still have needs that have to be met,"
Mr. Hoffheimer says. "The most that we can hope for is that they
are paying attention to prevalence, to gravity, to morbidity.
Their spending reports don't show that they do."
  Some advocacy groups have put such statistics at the center of
their lobbying. At the press conference on the Udall bill, the
Parkinson's Action Network passed out a chart comparing research
spending on Parkinson's with that on other diseases.
  Stephen McConnell, senior vice-president for public policy at
the Alzheimer's Association, says that such tactics could
backfire. But he is ambivalent about whether scientists or
Congress should get to decide how to spend appropriations for
biomedical research.
   "When Congress earmarks, it raises the profile of a disease
and attracts researchers to the field," he says. But money should
be spent where there is the most promise for research, he adds,
and "scientists are best equipped" to decide that.
  Gary Rose, a lobbyist  with the advocacy group AIDS Action, is
familiar with the frustration voiced by lobbyists for people with
other diseases. "I'd scream, too, if I didn't think Congress and
the NIH were paying enough attention to my disease." he says. "In
fact, I did scream for years."
   But comparing spending on one disease with spending on another
is a waste of time, he says. "Their time would be better spent
learning how to be as learned a scientist as those guys at NIH."
  "Learn about the drugs on the market, learn what research has
been done and what research opportunities are out there. Then go
to lawmakers or scientists with that kind of informed concern and
you will get a call, maybe a hearing, or somebody will ask Varmus
a question during testimony. This is what gets them thinking
about your cause."
Chart:
How NIH is Spending Research Funds, Disease by Disease

               # of people         Total research      Spending/
               afflicted in US        funds            patient

Diabetes       16,000,000          $313,334,000        $19.58
Coronary-
heart disease  13,670,000           285,150,000         20.86
Alzheimer's     4,000,000           314,159,000         78.54
Kidney dis.     3,512,000           203,677,000         57.99
Breast cancer   1,953,000           409,545,000        209.71
Parkinson's     1,000,000            34,218,000         34.22
Prostate cancer   968,000            94,614,000         97.70
Scleroderma       500,000             3,570,000          7.14
AIDS or AIDS
 virus            775,000          1,862,529,000      2,403.26
Cystic fibrosis    30,000             62,056,000      1,068.53

Source: National Institutes of Health, Centers for Disease
Control and Prevention

                         END
Linda Herman
[log in to unmask]