That women are second-class citizens of the medical research establishment is a claim much trumpeted. Hillary Rodham Clinton once remarked on the “appalling degree to which women were routinely excluded from major clinical trials of most illnesses.” A recent report of the Commission on Civil Rights claimed that “women have been excluded from clinical trials for decades.” Last June the Harvard Women’s Health Watch proclaimed that “nearly all drug testing has been done on men.”
But what we know is wrong. Last week the National Institutes of Health, which had stated in 1997 that “women were routinely excluded” from its research, issued a retraction of this claim. The Institutes’ recognition of this error (made in two letters to a Rockville, Md.-based advocacy group called Men’s Health America) is most welcome.
But don’t expect the women’s health lobby — the network of public “offices of women’s health” that exist on the state and federal levels, and the university-based “women’s health centers” — to admit it any time soon. For these groups must make women appear embattled and shortchanged if they are to gain government support, raise funds and justify themselves in the eyes of the public.
The NIH retraction comes a few months after the publication of a study by Curt Meinert and colleagues at Johns Hopkins University. Writing in the journal Controlled Clinical Trials, Mr. Meinert debunks an enduring feminist myth: that there is gender bias in medical research. His review of major medical journals in 1985, 1990 and 1995 found that female subjects outnumbered males at a rate of 13 to 1 across all cancer trials, with the vast bulk of the women participating in trials specifically for breast cancer. Yet the myth found its way into Al Gore’s campaign platform: “Throughout my career I have fought for more research funds for those diseases so recently considered less important because they befell only women, such as breast cancer. . . . I pledge to you: women’s health will always be at the top of my agenda.”
It’s hard to know what more any president could do, especially regarding breast cancer. Breast cancer research has received more money than any other cancer since 1985, the year the National Cancer Institute began keeping good records of disease-specific funding. Using the yardstick of “years of healthy life lost,” breast cancer is one of the five most generously funded illnesses, according to a 1999 article in the New England Journal of Medicine. The other four are heart disease, dementia, AIDS and diabetes.
And breast cancer is not an exception. Women were routinely included in all trials for years. Back in 1979, 268 of the 293 NIH-funded clinical trials contained female subjects. Food and Drug Administration surveys in 1983 and 1988 found that “both sexes had substantial representation in clinical trials.”
Why is it important to topple the myth that women are shortchanged by medical research? Because the notion that women have been denied their fair share of breakthroughs has been used to lobby for policies and resources that waste money and, worse, unwittingly harm women.
Recall the great mammography debate in the U.S. Senate. In 1997 an NIH consensus group declared that women in their 40s need not undergo yearly mammograms. The group reasoned that the relatively high rates of false diagnosis in 40-50 year-old women — and the needless surgery that may accompany such a diagnosis — did not outweigh the small reduction in mortality that the mammograms would yield.
Women under 50, then, were advised to make a decision with their doctor. Reasonable enough, but the lack of firm guidance incensed a cadre of women senators and Health and Human Services Secretary Donna Shalala. Sen. Olympia Snowe (R., Maine) led the crusade to pressure the NIH to change its recommendation to one of annual mammograms for all. During the debate, Ms. Snowe boasted to the Washington Post that “it was my female colleagues and I who led the charge to put an end to clinical trials entirely on men — even for breast cancer.”
Breast cancer is a serious matter, but women’s health suffers when the emphasis on breast cancer overshadows the five-fold larger risk of death from heart disease. This is where responsible women’s health advocates come in, to educate women about relative health risks and the importance of timely screening for blood pressure, diabetes, and cervical and breast cancer.
Finally, the notion that women need to be compensated for being left out has led to the expenditure of millions of federal and state dollars to create “offices of women’s health” within health agencies to oversee various expenditures and create new programs for women’s health. Instead of building bureaucracies, the money would be better spent on research or direct delivery of care.
An exception, in my view, is the NIH’s Office of Research on Women’s Health. Ably run for about a decade, that office has been collecting the data that show how widely women’s health has indeed been studied. Thanks to its efforts, we know that the composition of subjects in all clinical trials funded in 1998 — the last year for which there are data — was 68% women. In fact, despite its self-defeating rhetoric about exclusion, the NIH was the very font of decades of outstanding research in which women were routinely included.
The NIH’s official declaration that women have not been shortchanged by no means denies that progress still needs to be made in the health of women. But it is wrongheaded to confuse the need to know more — an imperative that will always be with us — with the myth that women are given short shrift by medical research.