The official name of the new Institute of Medicine report is "Scientific Opportunities and Public Needs." But it ought to be called "The Squeaky Wheel Gets the Oil."
Scattered in its 119 pages are facts of deadly importance. Taxpayer money allocated for combating disease, most of it through the National Institutes of Health, is spent largely not on any medical or logical basis but rather as a reaction to who cries "J'Acuse!" the loudest.
It started with the AIDS activists. They pursued a two-pronged strategy. First, they said, if you didn't grant every research dollar they demanded, you were a homophobe. Second, they said, it was no longer just a gay disease, it was now "an equal opportunity destroyer." One needn't be the proverbial rocket scientist to see the inherent contradiction here, but there's no arguing with success. And the AIDS activists were and remain phenomenally successfully.
AIDS received almost $ 34,000 in last year's budget for each death in 1996. By comparison, cancer received less than $ 5,000 and heart disease less than $ 12,000.
Breast cancer activists then openly copied the AIDS campaign. They grossly exaggerated the risks of contracting the disease and claimed if you didn't grant every research dollar they demanded, you were a misogynist. They also fabricated a "breast cancer epidemic" built around the grain of truth that there had been a sharp increase in breast cancer diagnoses in the 1980s.
They ignored the cancer experts who said this was merely a temporary jump caused by earlier detection. They also ignored the fact that new prostate cancer diagnoses increased five times faster in this period than new breast cancer diagnoses. Yet in 1992, the media referred to a breast cancer epidemic 35 times more often than it did to a prostate cancer epidemic. Then, just as the experts had predicted, the sudden increase in breast cancer detections was followed by a sharp drop. But the myth of the "breast cancer epidemic" lives on, and women continue to be terrified by it.
Still, the strategy worked brilliantly, so that NIH breast cancer allocations now outnumber those for prostate cancer by about five times per case and four times per death. Further, then-Rep. Pat Schroeder (D-Colo.), militantly feminist and rabidly anti-military, killed two birds with one budget in slicing out hundreds of millions of dollars of defense appropriations and devoting them to breast cancer research.
The inevitable result is that funding for other diseases suffered - or, more specifically, persons with those diseases suffered. "In 1993, for example," the IOM report notes, National Cancer Institute "allocations for breast cancer research increased by $ 53 million, cervical cancer research funding increased by $ 10 million, ovarian cancer research funding increased by $ 6 million." All this was in response to charges of spending discrimination against women. Prostate cancer research funding increased by $ 7 million.
But, notes the report, "To achieve these increases, NCI had to cut basic research funding for leukemia, non-Hodgkin's lymphoma and cancers of the colon, bladder, kidney, and brain, as well as for public information and chemoprevention."
Inevitably, every group of disease sufferers short of those with bunions and tonsillitis began agitating and hiring professional lobbyists. Thirty-one patient advocacy groups submitted written or oral testimony before the IOM as it worked on its report. And who can blame them? But now we have something that's been dubbed "Disease Wars."
Confronted with such massive disparities, the winners in the squeaky wheel game always give the same response: We shouldn't be fighting against each other; the whole research pie should be enlarged. Well, it is being made somewhat bigger. But notes the IOM report, "Although ... both the administration and the U.S. Congress have promised a substantial (NIH funding) increase for 1999, it will never be large enough to meet every need or fund every promising lead. Choices must be made and priorities must be set."
Moreover, the problem of inequity remains. If AIDS and breast cancer are receiving an overly generous slice of the pie now, increasing the size of the pie hardly rectifies this.
There's no simple formula for how research money should be allocated. But chief among the considerations should be: But the very first step is to stop rewarding those who artificially make their wheels squeak.
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