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Thought you might want to read this. http://www.sciencedaily.com/1996/July/01/story4.htm The Journal of NIH Research 06/01/96 Body-Count Budgeting: New Pressure To Shift Funding Among Diseases Bruce Agnew "During all the 15 years that I have served on this subcommittee," said Rep. John Porter, R-Ill., chairman of the House Appropriations Subcommittee on Labor, Health and Human Services (HHS), and Education, early in this spring's hearings on NIH's budget, "I always thought it was understood that there would be nothing, ever, more destructive than to set disease against disease by adjusting [funds] between institutes, taking from one and giving to another." But this year, Porter warned, "I know I'm going to have a hard job convincing a number of people on our side that that's the case." Whether Porter likes it or not (he doesn't--and neither does NIH Director Harold Varmus), some fellow Republican members on his subcommittee are once again promoting the idea that NIH funding is not being divided fairly among diseases. They may try to force a shift in NIH spending priorities later in June, when the panel begins drafting NIH's funding bill for fiscal year (FY) 1997, which starts Oct. 1. The primary target for congressional critics of the way NIH divides the research-funding pie is the $1.4 billion allocated for AIDS research in the administration's proposed $12.4 billion NIH budget for FY 1997 (see April issue, page 23). During the House Labor-HHS-Education subcommittee's NIH hearings April 18-25, Rep. Jay Dickey, R-Ariz., asked HHS Secretary Donna Shalala for a comparison of the percentage of AIDS-research proposals and the percentage of cancer-research proposals that win funding. (Shalala promised to provide the answer for the record--a fairly common response to that sort of question at appropriations hearings--but had not done so by the time The Journal of NIH Research went to press.) Rep. Henry Bonilla, R-Tex., asked Varmus to provide for the record a breakdown of how much research HHS funded per death from cancer, diabetes, heart disease, human immunodeficiency virus-type 1 (HIV-1)/AIDS, and stroke in FY 1995, the most recent complete year. And Rep. Ernest Istook, R-Okla., a second-term conservative who has a knack for asking NIH officials nettlesome questions, came to the hearings armed with a chart showing dramatic disparities between HIV/AIDS and other diseases in research dollars spent per death and in relation to medical costs. Istook's chart--prepared by James Crapo, a professor of medicine and pathology at Duke University in Durham, N.C., and brother of Rep. Michael Crapo, R-Idaho--indicated that in 1991, HIV/AIDS was the ninth leading cause of death in the United States. In that year, AIDS accounted for 11.7 deaths per 100,000 population--far below the 285.9 deaths per 100,000 due to heart disease, 204.1 deaths per 100,000 due to cancer, and 56.9 deaths per 100,000 due to stroke. But NIH research funding for those diseases worked out to $110.81 per AIDS death, compared with $2.77 per death for heart disease, $10.39 per death for cancer, and $1.85 per death for stroke. NIH research funding in relation to the cost of medical care for each disease showed a similar pattern. "HIV/AIDS [funding] is runaway," Istook said--although he emphasized that he is concerned about AIDS funding "not because it's not a terrible disease, but [because] it's one of many terrible diseases." Ironically, an NIH report was the source of the numbers Istook was citing. Responding reluctantly to a 1994 order from the Senate Appropriations Committee, NIH on Feb. 28 sent Congress a hefty statistical compilation of death rates, direct costs, and indirect economic costs of 66 major diseases and conditions, together with a breakdown of NIH research funding on each. But accompanying the figures was a 28-page report cautioning repeatedly that the data--largely a conglomeration of previously published material rather than the result of a new study--are incomplete, imprecise, inconsistent, variable, speculative, occasionally contradictory, sometimes overlapping, and potentially misleading. Not surprisingly, the report cautioned that the cost-of-illness analyses "do not provide a simple formula for the allocation of research resources." Since March, the document and its 28 pages of caveats have been circulating among the research-advocacy groups in Washington, with surprisingly little effect. "I am surprised that I haven't heard more discussion about it, but that may be due in part to the way it's slowly permeating through the community," says David Moore, associate vice president for governmental relations of the Association of American Medical Colleges in Washington, D.C. "Whether people haven't gotten the report yet, or whether they haven't read the report yet, or whether they don't want to make those sorts of [disease-vs.-disease] comparisons, I can't tell." Varmus and Porter clearly hope that the silence means that the cost-of-illness report is being discounted as not particularly useful. "As many of my colleagues, especially Dr. Lenfant [National Heart, Lung, and Blood Institute Director Claude Lenfant] have pointed out to me, budgeting by body count is not the right way to go," Varmus told Porter's subcommittee on April 18. Other factors that must be considered in allocating funds, he said, include scientific opportunities, the variety of grant applications NIH receives in various categories, and the need for research into rare diseases (a favorite congressional subject). "Many of the most important discoveries that we have made have come from the pursuit of rare diseases," he said. Under persistent questioning by Istook, Varmus insisted that AIDS research deserves special emphasis now because "it's an infectious disease, it's a new disease, it's continuing to spread" into U.S. subpopulations "and it's spreading like wildfire internationally." And even if NIH did not have to comply with existing congressional directives, Varmus said, "I don't believe that there would be a major change in the [research-funding] pattern. There would probably be small changes, but not major changes." Will that satisfy Istook and his fellow skeptics? It may have to, at least for the moment, because the mood in Congress this year is running strongly against meddling with NIH decision-making. "The sentiment has been as anti-earmark as it has been for some time," notes Michael Stephens of Van Scoyoc Associates in Washington, D.C., a former staff director of the House Labor-HHS-Education Appropriations Subcommittee who is now a consultant to FASEB (the Federation of American Societies for Experimental Biology in Washington, D.C.). Istook last month was still keeping open the option of offering an amendment to the NIH funding bill to reduce the AIDS-research allocation. An Istook aide says that, like Porter, Istook believes that "it ought to be science that decides where this money goes." But he adds, "there ought to be some kind of weighing factor we can put in place" to achieve "some correlation" between research funding and a disease's impact. In fact, simply making the argument may serve that purpose. "You have to understand this in its context," Porter said in an interview on May 8. "Congress does a lot of message-sending, and the patient-advocacy groups send messages, and the research community sends messages as well. Industry sends its messages. In the end, those messages have to be synthesized and evaluated by NIH itself--by science, and not by Congress." At the same time, Porter says, NIH officials "have got to evaluate all of our feelings and priorities, and I think they do." At the very least, Istook and his allies are sending a message. --BRUCE AGNEW --------------------------------------------------------------------------- Margaret Tuchman [log in to unmask]