WASHINGTON (July 8, 1998 5:27 p.m. EDT http://www.nandotimes.com) -- People
don't understand how the National Institutes of Health decides which diseases
to study, leading to a perception that the loudest complainers get the largest
portion of the $13 billion research budget, an advisory panel says.

A report by the Institute of Medicine suggests that some of the most vocal and
politically active disease interest groups, such as for AIDS and for breast
cancer, have been rewarded with sharp increases in NIH research spending.

Without making a judgment on any such connection, the report chided NIH for
not establishing clear links between spending and "the burden of disease" and
for poor communication with the public.

Asked for examples where diseases were favored with research dollars because
of political pressure or organized advocacy, the panel's chairman, Leon E.
Rosenberg cited "the well-known examples of AIDS and breast cancer" but would
not go further into the issue.

There is also the perception, Rosenberg said, that NIH is more interested in
science than in human suffering.
"Some (members) of the public have concluded -- incorrectly, we believe --
that NIH cares more about curiosity than cure, more about fundamental science
than clinical application," Rosenberg, a Princeton University scientist, said
Wednesday at a news conference where the report was released.

Charts illustrating the report highlight the wide disparity in spending for
research on different diseases.

In 1996, for example, the NIH spent $851.6 million for research on heart
disease, a disorder blamed for 732,400 deaths in 1994. The agency spent $1.4
billion in 1996 for research on AIDS, a disease that caused 42,100 deaths in
1994. That means the agency spent about $1,162 for each heart disease death
and $33,513 for each AIDS death.

AIDS spending increased dramatically after activists lobbied Congress, staged
demonstrations and even disrupted some meetings at the NIH itself.

In another example, the report said that the National Cancer Institute, an NIH
agency, increased breast cancer research by $53 million in 1993, ovarian
cancer research by $6 million and prostate research by $7 million. But in
order to fund these increases, the cancer institute cut spending on six other
types of cancer research and on public information efforts, the report says.
In recent years, women, including members of Congress, have led marches
protesting the lack of emphasis on breast cancer research and on general
women's health issues. There also has been a strong lobbying and advertising
effort calling for more federal attention to prostate cancer.

"These trends have fueled the perception ... that NIH funds research on
diseases with the most active groups behind them rather than those disease for
which the needs are greatest in terms of suffering and cost," the report said.


There is a perception, the report said, that NIH spending "often follows
current politics and political correctness or responds to media attention to
certain diseases which results in unacceptable disparities in spending."

Rosenberg declined to comment, however, when asked whether that perception had
any validity.

Protests about the NIH by activist groups also have prompted some in Congress
to "micromanage" NIH research and to push through appropriations that mandated
some specific research that may not have been scientifically appropriate.
Much of these actions, the report said, may be because the NIH has done a poor
job of informing the public of the careful, peer-reviewed and scientific basis
for the distribution of the agency's billion budget.

Improving communication with the public would "reduce the likelihood that
Congress will feel the need to mandate specific research programs," said
Rosenberg. He urged the NIH to seek more advice and suggestions from the
public "without delay."
NIH director Harold Varmus, a physician, praised the Institute of Medicine
study and said that he agrees "there is room for additional public input into
these processes."

Varmus, in a statement, said his agency would study ways to implement
suggestions in the report which he called "useful guidance."

Although several agencies within the NIH have committee positions for members
of the public, Rosenberg said some of those slots are filled by physicians and
patent lawyers instead of ordinary citizens.

Not filling the slots with ordinary citizens "is a missed opportunity and has
resulted in the perception of some groups that NIH does not encourage public
input at the highest levels of its advisory processes," the report said.

The Institute of Medicine is a unit of the National Academy of Sciences, a
private organization chartered by Congress to advise the federal government on
technical and scientific issues.
Its report comes at a time when some members of Congress, along with a number
of scientific organizations, are pushing to double NIH research funding within
five years. The agency, with a budget of $13.64 billion, is the single largest
provider of health research funds in the United States.

By PAUL RECER, AP Science Writer