NIH: Report Suggests Review Of Research Spending
The National Institutes of Health should seek broader public input on decisions about how to spend its nearly $14 billion budget, according to a new report from the Institute of Medicine. The report was requested by Sens. Bill Frist (R-TN) and Dan Coats (R-IN) "amid growing concern that NIH's priorities often reflected the lobbying efforts of one disease advocacy group or another" (Norton, CongressDaily, 7/8). "We began to wonder whether or not the process was more of a political process rather than a true national priority-setting process carried out by the National Institutes of Health," said Frist ("All Things Considered," NPR, 7/8). Coats said, "I have spoken with families who had several members seriously afflicted by diseases which seemed to be low priorities at NIH, and I could not tell them why." Last September, the senators requested that an IOM committee assess the criteria used by the NIH to determine funding allocations for disease research, the process by which funding decisions are made, the mechanisms for public input into the priority setting process and the impact of congressional mandates on research funding decisions (Frist release, 7/8).
From The Brain Trust
The 119-page IOM report, "Scientific Opportunities and Public Needs," recommends that the NIH take into account the total burden -- medical, psychological, economic -- of diseases in allocating research funds. The committee essentially calls on the NIH to adhere to rules that are currently in place. The present system "calls for an emphasis on diseases that have the greatest public health impact (as measured, for example, by the number who die from that disease or the total cost of caring for patients); the potential for progress in a given field; the scientific quality of the proposed research"; the maintenance of a "diversified research portfolio" and the prevalence of quality scientists and facilities to study a given area. However, Dr. Leon Rosenberg, chair of the IOM committee that prepared the report, said the "NIH does not hew to those rules." He said, "There are some celebrated examples where very effective and forceful lobbying and political pressure have affected resource allocations. Breast cancer and AIDS are two very clear examples" (Weiss, Washington Post, 7/9).
The AIDS Example
The New York Times reports that the IOM panel "found big disparities in NIH spending per person, depending on the disease." In 1996, NIH "spent far more" on AIDS research than on heart disease research -- $43,000 per AIDS death compared to $1,160 per heart disease death. These disparities, the panel said, "encourage 'the perception of some members of Congress and the public that NIH spending often follows current politics and political correctness, or responds to media attention to certain diseases." The Times notes that Rep. Ernest Istook (R-OK) "has raised questions" about NIH's research priorities, arguing: "Federal spending on disease research should consider how many people are affected and the costs of major diseases." But Daniel Zingale, executive director of AIDS Action, said, "Allocating dollars for deaths is an overly simplistic way to approach biomedical research. We also need to consider which diseases cause the most suffering, the years of life lost and the chances of scientific breakthroughs."
Don't Forget The Little Guy
Rosenberg said the NIH "has fallen short" in its dealings with the general public. The New York Times reports that the IOM committee found that each of the NIH institutes were appointing to their individual advisory councils only doctors, lawyers and professors -- excluding ordinary citizens who may have valuable input on the impact of a disease. The IOM report recommends that a certain percentage of seats on these advisory panels be filled by "representatives of patients and their families, and of populations with special health problems," such as minorities and the elderly (Pear, 7/9). The Washington Post reports that the committee "also calls for creation of advisory committees within each of NIH's 21 institutes and centers -- including the office of NIH Director Harold Varmus, which is cited as being especially inaccessible" (7/9). Dr. Varmus, in particular, should establish a "council of public representatives" for citizens to advise NIH on funding priorities and an Office of Public Liaison to review and evaluate public outreach and input, the IOM report suggests (Frist release, 7/8). Rosenberg defended NIH, saying there may be misperception about how the agency prioritizes research. "Some of the public have concluded, incorrectly we believe, that NIH cares more for curiosity than cure, more about fundamental science than clinical application," he said.
In wake of his panel's findings, Rosenberg said, "We certainly do not expect that advocates for certain diseases will cease and desist because of this report or anything that Congress or the NIH does to implement it. But we think that if these recommendations are implemented, there will be a fairer and broader dialogue in which NIH will consider and respond to public input" ("All Things Considered," 7/8). Myrl Weinberg, president of the National Health Council, a coalition of more than 100 public health groups, said the committee's recommendation that laypersons sit on NIH committees is "absolutely appropriate." (New York Times, 7/9). Frist and Coats said they will review closely the committee's recommendations as they consider future legislation impacting NIH (Frist release, 7/8). Click here to link to the IOM report, which is available through the National Academy of Science's website -- www.nas.edu.