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On Monday, December 14, 1998, The LA Times ran a fine, long obituary of Mo Udall. Also on that day, by coincidence, the following opinion piece was in the editorial section. There is no mention of the Udall bill, yet it's another voice addressing the issues in our on-going discussion of the "politics of medicine". The author is Daniel S. Greenberg, a visiting scholar in the history of science, medicine and technology at the Johns Hopkins University. Though he's not on our side, I think he summarizes well where we stand in the big picture. Mary Yost, age 50, diagnosed 42, symptoms 32, sinemet, mirapex, udalling, carolling, t'ai chi, Barb Patterson Fan Club * * * * * * * * * * * * * * * * * MEDICAL RESEARCH'S STAR SYSTEM HEALTH: Politically correct diseases often get more than their rightful share of public funding. by Daniel S. Greenberg More than ever, lobbies of the afflicted are moving to influence spending on medical research, claiming neglect by an aloof and elite science establishment. In the complexities of modern biomedical research, however, the experts often do know best. At a rapid pace and with promising early successes, research is moving deep into cells and genes. But much of it is not specific to any disease or to the demands of the organizations clamoring for their particular disease. The object of dissatisfaction is the National Institutes of Health, paradoxically, the most beloved governmental agency, venerated by the public and both political parties, shielded from the budget ax and constantly badgered by disease-related organizations to do more about their specific concerns. The politics of health research is now stacked with at least 40 such "advocacy" organizations, each dedicated to a serious medical disorder, from the rare to the prevalent. Most have established a Washington base with lobbyists. Given the distressing circumstances that led to their creation, all understandably feel more should be done for their cause by NIH, the manager of the world's largest bankroll for health research: $15.6 billion this year. Starting with the agitation that led to the wa r on cancer nearly 30 years ago, each political success has inspired other disease lobbies to intensify their efforts. Relentless lobbying raised the appropriations tied to AIDS research from zero to $1.8 billion in 15 years. Lobbying has quadrupled funds for breast cancer research in just a few years. Spinal injury research has gained millions at NIH since actor Christopher Reeve was paralyzed and became its champion. Meanwhile, the lagging lobbies have resorted to "body count" analyses that compare NIH spending with numbers of patients. Most of the tabulations prepared by NIH are bureaucratic hokum, dished up to satisfy government requirements for labels on spending. While some research is focused on specific diseases, NIH puts most of its money into basic research that's relevant to multiple failings of the human body. But the dollar amounts attached to the various diseases do appear to be extremely unfair. Thus, for research on diabetes, with a patient population estimated at 16 million, NIH spent $313 million in 1997, or $19.58 per patient. For AIDS-related research, the comparable figures were 775,000 patients, and $1.8 billion for research, or $2,403 per patient. For breast cancer, even with increased funding, 1.9 million patients and $409 million for research worked out to $209 per patient. The arithmetical inequities plus NIH's insistence that it knows best , led Congress last year to order an outside study of how NIH makes its plans and priorities. The main product of that study was a recommendation, soon to be implemented, for the creation of a council "to facilitate interactions between NIH and the general public." The NIH management is wise in the ways of dealing with the advocacy groups, encouraging them to work for a bigger overall budget while keeping them distant from specific spending decisions. NIH has generally done well in that briar patch, yielding its judgment to the lobbies only when the political heat becomes too intense. A serious question has gone unasked, for example, about Reeve's success in raising the budget for research to reverse his dreadful injury: If promising research was ready to go but lacked money before Reeve appealed for it, why didn't NIIH get the money from its supportive friends in Congress? If the research isn't promising, why risk wasting it? The answer, of course, is that celebrity and politics dictacted more money, regardless of the scientific potential. So far, medical research has stood up well against the politics of disease advocacy. The trends, however, are not in the right direction.