Congress Takes a Hard Look at Health Research Priority Setting
Dr. Harold E. Varmus, Director of NIH, is enthusiastic about these prospects and has said, “This is a budget in which everyone wins,” explaining, “[research in] every disease will see increases.” But a larger pie is still a limited pie and research in some diseases will increase more than others. In the past, a bigger NIH budget has not ensured a satisfied constituency of disease-specific research advocates. The total NIH budget has actually doubled in current dollars, growing from $6.6 billion in FY 1988 to $13.6 billion in FY 1998, but patient advocacy groups have continued to pit disease versus disease when lobbying Congress and the NIH for more research. Expressing the frustrations of many, Rep. Fred Upton (R-MI) has said, “The NIH does not have the resources to do the job we want it to do.”
With so many groups vying for disease-specific funding, controversy has increased over how research priorities are set at the NIH. The 105th Congress has held several hearings on priority setting, and in last year’s appropriations for Labor, Health, and Human Services, Congress directed the Institute of Medicine (IOM) to study the issue.
The priority setting process is complex and multitiered, possessing both formal and informal components. In balancing the health needs of the nation with available scientific opportunities, criteria such as disease prevalence, number of deaths, extent of disability, and economic costs are weighed with technological developments and scientific breakthroughs. To find this balance, NIH relies upon extramural scientists, professional societies, patient organizations, voluntary health associations, Congress, the Administration, government agencies, and NIH staff. Accomplished investigators evaluate grant applications for merit. National advisory councils consisting of interested members of the public and the scientific and medical communities review policy. Outside experts, Congress, patient groups, the Office of Management and Budget, and other groups and agencies recommend budgetary and programmatic improvements. The final word on research programs, however, lies with the NIH Director and the directors of the individual institutes.
Former National Research Council Executive Officer Philip M. Smith has praised the current process as “pretty well right” and the Federation of Behavioral, Psychological, and Cognitive Sciences has said the current structure provides “many avenues of influence,” but others are concerned that it lacks a mechanism for public input. Instead of pursuing NIH channels, many groups seeking increased funding for research on specific diseases appeal directly to Congress.
Congress has the power to earmark funds for particular research areas. According to the Congressional Research Service, earmarking means “specifying increased emphasis on particular programs in report language on appropriations bills,” but the term is used very loosely and may refer to authorizations as well. Earmarking, the National Breast Cancer Coalition believes, maintains public input for public funds.
However, many Members are not comfortable with appropriating dollars on a political versus a scientific basis. In a March 26 hearing held by the Subcommittee on Health and Environment, Rep. Bart Stupak (D-MI) said, “We’re in a quandary.” The medical director of the National Parkinson Foundation suggests that Congress listen to “the signal that is the loudest and the most persistent.” If Congress did indeed follow this advice, limited research dollars would be monopolized, leaving countless scientific opportunities unfunded, said Rep. John Edward Porter (R-IL). Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases, has told the IOM study committee that earmarking for an area where there is no justification for scientific progress is harmful. Rep. Porter, Chairman of the Appropriations subcommittee that funds NIH budget, recognizes the authority Congress has to earmark, but strongly opposes moving one disease ahead of another politically. “It would be a terrible mistake,” he said, agreeing with NIH officials who stress the importance of leaving research spending priorities to scientists.
The IOM committee on the NIH research priority-setting process will
assess the criteria and process NIH uses to determine funding for disease
research, the mechanisms for public input into the process, and the
impact of statutory directives on research funding decisions. The IOM
committee will complete its report in early July.