National Institutes of Health
who decides how much goes where?

By Alexandra Matisoff-Li
Illustrations by Malcolm Garris
September 24, 1998

Every year the National Institutes of Health spends $110 annually per death resulting from AIDS, compared with $2 per death from stroke and $3 per death from heart disease. Who decides and what’s behind the politics?

With a 1998 budget of nearly $14 billion, the NIH is the nation’s largest single funder of biomedical research. But few fixed rules govern how the NIH prioritizes the diseases it researches. The agency has weathered criticism that the funding process has become too politicized by congressional funding directives, earmarked for specific diseases, as the result of lobbying by special interest groups. And a recent report recommended the agency use more rigorously scientific methods of priority setting and spending and better justify spending decisions to Congress and the public.

"When people say they want to depoliticize the NIH, they are either being naive or are misinformed," said Leon Rosenberg, MD, a Princeton University biology professor who chaired the committee studying NIH funding. "The NIH is a public agency, vested with public funds; therefore, it needs to be accountable to the public. Any agency constructed that way is going to have political considerations enter into the way it functions."

Rosenberg’s report, issued in July by the Institute of Medicine (IOM), an arm of the National Academy of Sciences, said patient advocates and other nonscientists should have more influence over how much the agency puts toward researching various diseases.

Congressional directives

Critics say the current congressional funding mechanism for the NIH forces the agency to follow political whim. Each of the NIH’s 21 institutes receive individual appropriations from Congress, obligating each to allocate its funds among various scientific research endeavors. NIH Director Harold Varmus, MD, thinks consensus should play a bigger role.

"Many fields of medical research deserve increased financial support and could move faster with more funds," Varmus said in testimony before Congress last May. "Because resources are limited, pushing funds vigorously in one direction limits the flow in others ... with fierce competition among agencies ... it is particularly important to achieve consensus on new initiatives before assigning scarce federal dollars to them through legislative actions."

Varmus said Congress has a right to know how NIH money is spent, but said the current practice of coding funds by disease category across the agency is inherently imprecise. There is no "right" number of research projects that should be assigned to any one disease, Varmus said. Instead, he advocates a "sufficiently flexible" system for allocating NIH funds to accommodate new proposals.

Research on less well-known diseases suffers under today’s system, argues Abbey Meyers, president of the National Organization for Rare Disorders in Newfairfield, Conn. NORD is a consortium of nonprofit foundations covering rare diseases, each affecting fewer than 200,000 Americans.

"The main problem is that it’s the disease-of-the-month system up there in Washington," she said. "It’s not so much NIH’s fault, rather it’s Congress’ fault. If someone in a congressman’s district complains about a disease, Congress pours money into research even if it isn’t yet very advanced in that area."

NIH funding priorities

Part of the ongoing public relations problem the agency faces is explaining its funding methods to the American people. Since no single measure is used to assess the nation’s health needs, things can get complicated. In a 1997 NIH report, Setting Priorities at the NIH, the agency outlined how funding allocations are made for different diseases.

In deciding how much to allocate for individual diseases, the NIH looks at the number of people with a particular disease, the number of deaths caused, the degree of disability produced, the economic and social costs, and the need to act rapidly to control the disease’s spread. Overall public health needs—judged by incidence and cost of the specific disorder—are also considered, the report said.

Criticism, recommendations

The wide variation in the amounts spent on different diseases has raised a red flag. Some disease-specific interest groups have also begun campaigns for increases in NIH funding for particular afflictions and question the NIH’s priority-setting funding process, the IOM study said.

The IOM study recommended that NIH’s system be less decentralized, Rosenberg said, giving the NIH director more freedom to define and parcel out funds. "With as many cross-cutting issues and considerations in the NIH, the director needs better capacity to influence and recommend multiyear plans," Rosenberg said.

The IOM study recommended each institute establish offices devoted to soliciting public opinion on funding priorities and document efforts to generate public input. The public should also regularly receive more information about the agency’s planning and budget processes, according to the report.

One thing the report’s authors and other critics agree on is that scientific decisions should lie with the NIH, not with Congress.

"Decision making should remain with the leadership of the NIH," Rosenberg said. "They are in the best position to have scientific issues outweigh political issues when it comes to allocating funds."

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