Mary and listserv: Good article does it include pd figures anywhere? Thanx, Bill At 05:47 AM 12/18/98 +0100, you wrote: >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. > >