The following article appeared in the April 18, 1997 issue of the Chronicle of Higher Education: "Lawmakers Push NIH to Spend More on the Most-Prevalent Diseases" by Paulette V. Walker Washington Norma Udall, standing before a poster-sized picture of her husband, described in painstaking detail the toll that Parkinson's disease had taken on the former Arizona Congressman. Morris K. Udall served for 30 years in the House of Representatives before falling ill in 1991, and he has been hospitalized ever since. She was followed to the podium at a press conference here last week by several people afflicted with the disease, she described the uncontrollable shakes and the loss of mobility and speech that characterize it. Also speaking was Senator Paul Wellstone, a Minnesota Democrat whose parents both died of complications related to Parkinson's. Describing his quest as a "labor of love," Senator Wellstone vowed to "press and press and press, hard" for passage of a bill named for Mr. Udall. The legislation would require the National Institutes of Health to spend at least $100 million a year on research on Parkinson's. The agency plans to spend $34 million this year. Lawmakers, spurred by personal experiences or by intensive lobbying from advocacy groups for people with certain diseases, often have directed the NIH to spend a portion of its annual appropriations on specific ailments. In the past, such earmarked funds have accounted for significant spending increases for research on prostate cancer and AIDS, among other disease. OPPOSITION IN CONGRESS Some members of Congress, including Representative John E. Porter, have campaigned to end this practice, arguing that the scientists at NIH are best qualified to make those decisions. Mr. Porter, an Illinois Republican, is chairman of the House Appropriations subcommittee responsible for setting the agency's budget. But many lobbyists for specific diseases, along with some of Mr. Porter's colleagues, worry that NIH officials don't put enough emphasis on the prevalence of a particular disease, or its cost to society, in deciding where to invest its money. For instance, NIH spending on AIDS research in 1997 will amount to $2,403 for each person in the U.S. infected with HIV, the virus that causes the disease. By comparison, on Parkinsons research the agency will spend $34 per person. Next month, the director of the NIH, Harold E. Varmus, is due to submit a report to Congress, explaining how the agency sets its priorities. Mr. Porter's panel will hold a hearing on the subject. "I know that Congress wants to avoid earmarking, and I dont want to go that route either," says Representative Ernest J. Istook, a Republican from Oklahoma and a member of Mr. Porter's panel. "But NIH has shown a total unwillingness to consider common-sense factors. We need to find a way to make sure that they are injecting into their process considerations for prevalence and health-care costs. AIDS is a horrible disease, but it does not cause near as much suffering to near as many people as cancer or diabetes or a host of other, under funded diseases." During appropriations hearings this year, Dr. Varmus assured lawmakers that NIH officials take those factors into account in dividing up funds. But "scientific opportunities and the availability of applications to study certain questions" are significant factors, he said. GENES LINKED TO DIABETES Research on one disease often produces discoveries for another, he added. Last December, while studying how genes work, scientists at the University of Chicago discovered two genes that are linked to diabetes. Previously, neither gene had been thought to play a role in the disease. "So what counts here is the way in which we exploit discoveries" like that one, Dr. Varmus said. Such explanations do not comfort lobbyists for research on specific diseases, many of whom suffer from those diseases. "I understand and agree that scientists need to pursue basic science, and that not everything can be attributed to a specific disease," says Sharon L. Monsky, who has scleroderma, a disorder that leads to overproduction of collagen in body tissue, causing the skin to harder. Ten years ago, she founded the Scleroderma Research Foundation. "But federal research dollars are dwindling, and the disparity will only get worse. Earmarking may not be the answer, but Congress and science need to be more responsive to the health concerns in our country." In fiscal 1996 and 197, the NIH received substantial increases in its appropriations. President Clintons proposed budget for fiscal 1998, however, would increase the agencys budget by only 2.6 per cent to $13.1 billion from $12.7 billion. Representative Porter and Senator Arlen Specter, Republican from Pennsylvania who is in charge of the Senate Appropriations subcommittee that develops the agency's budget, have promised to fight for at least a 7.5 percent increase. "It will not be easy to craft a bill with the kinds of increases the NIH deserves," given the demands for funds for education, which come out of the same part of the federal budget, Mr. Porter says. But having Congress make more earmarks for research on specific diseases is not the answer, he says. The Office of AIDS Research at the NIH is a good example of the hazards of earmarking, he says. In fiscal 1995, his committee not only directed the NIH to spend $1.3 billion on AIDS research, but also indicated specifically how much of that total should be given to each institute within the agency. Mr. Porter says the earmarking tied the hands of NIH officials, preventing them from capitalizing on scientific opportunities. In fiscal 1996, his committee declined to set a specific amount to be spent on AIDS research and instead gave Dr. Varmus and William E. Paul, director of the AIDS office, the authority to decide how much money each institute should get for the purpose. This year, lawmakers went further, allowing Dr. Varmus and Dr. Paul to shift up to 3 per cent of the NIH's total AIDS funds among the institutes during the year to capitalize on research opportunities. Lawrence S. Hoffheimer, a lobbyist for the National Parkinson Foundation, disagrees with the approach of Mr. Porter and Dr. Varmus. "The folks at NIH are acting like the benevolent dictator, saying, "Scientists know what's best," he argues. "I suspect Congress is shying from earmarks because they don't want to have to say No" to the supporters of specific diseases. 'NEEDS THAT HAVE TO BE MET' "The bottom line is that there may be fewer dollars to go around, but our patients still have needs that have to be met," Mr. Hoffheimer says. "The most that we can hope for is that they are paying attention to prevalence, to gravity, to morbidity. Their spending reports don't show that they do." Some advocacy groups have put such statistics at the center of their lobbying. At the press conference on the Udall bill, the Parkinson's Action Network passed out a chart comparing research spending on Parkinson's with that on other diseases. Stephen McConnell, senior vice-president for public policy at the Alzheimer's Association, says that such tactics could backfire. But he is ambivalent about whether scientists or Congress should get to decide how to spend appropriations for biomedical research. "When Congress earmarks, it raises the profile of a disease and attracts researchers to the field," he says. But money should be spent where there is the most promise for research, he adds, and "scientists are best equipped" to decide that. Gary Rose, a lobbyist with the advocacy group AIDS Action, is familiar with the frustration voiced by lobbyists for people with other diseases. "I'd scream, too, if I didn't think Congress and the NIH were paying enough attention to my disease." he says. "In fact, I did scream for years." But comparing spending on one disease with spending on another is a waste of time, he says. "Their time would be better spent learning how to be as learned a scientist as those guys at NIH." "Learn about the drugs on the market, learn what research has been done and what research opportunities are out there. Then go to lawmakers or scientists with that kind of informed concern and you will get a call, maybe a hearing, or somebody will ask Varmus a question during testimony. This is what gets them thinking about your cause." Chart: How NIH is Spending Research Funds, Disease by Disease # of people Total research Spending/ afflicted in US funds patient Diabetes 16,000,000 $313,334,000 $19.58 Coronary- heart disease 13,670,000 285,150,000 20.86 Alzheimer's 4,000,000 314,159,000 78.54 Kidney dis. 3,512,000 203,677,000 57.99 Breast cancer 1,953,000 409,545,000 209.71 Parkinson's 1,000,000 34,218,000 34.22 Prostate cancer 968,000 94,614,000 97.70 Scleroderma 500,000 3,570,000 7.14 AIDS or AIDS virus 775,000 1,862,529,000 2,403.26 Cystic fibrosis 30,000 62,056,000 1,068.53 Source: National Institutes of Health, Centers for Disease Control and Prevention END Linda Herman [log in to unmask]