The National Institutes of Health - target of demonstrations, protest marches and picketing in recent years - needs to listen more to ordinary people when deciding how to spend its $13 billion research budget, a government advisory panel said Wednesday.
A report by the Institute of Medicine took the NIH to task for failing to include in its advisory councils some people with special health problems or advocates for specific diseases. It said the NIH has given the perception that it "cares more about curiosity than cure.""We think that NIH has fallen short in its ability to explain to the public" the way it decides on how to spend research dollars, said Leon E. Rosenberg, a Princeton University scientist and chairman of the Institute of Medicine committee that prepared the report.
Improving communication with the public would "reduce the likelihood that Congress will feel the need to mandate specific research programs," said Rosenberg. He said the NIH should seek more advice and suggestions from the public "without delay."
Although several agencies within the NIH have committee positions for members of the public, Rosenberg said some of those slots are people such as physicians instead of 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 an element 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.
In recent years, NIH has come under attack by groups that claim the agency is spending too much money for some diseases and not enough for others.
AIDS advocates have disrupted some advisory meetings with protests about HIV research plans, and some women, including members of Congress, have led marches protesting the lack of emphasis on breast cancer research and on general women's health issues.
NIH has sharply increased funds spent on AIDS research and on cancers that had strong congressional lobbies.
For instance, 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 to fund these increases, NCI cut spending on six other types of cancer and on public information efforts, the report says.
"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.
As an example, charts illustrating the report show that in 1996 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 in research monies for every heart disease death, versus $33,513 for every AIDS death.
In another measure, the chart shows there were $70 billion in direct costs to society from heart disease, while there was $10.3 billion in direct costs to society from AIDS.