Originally created 07/09/98

NIH advised to listen more to ordinary people



WASHINGTON -- 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.

There is also the perception, said Leon E. Rosenberg, chairman of the advisory panel, that NIH is more interested in science than in human suffering.

"Some 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 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 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 Dr. Harold Varmus 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.