Dr. Ruth Simkin once wrote, in an editorial entitled Women’s Health: Time for a Redefinition published in The Canadian Medical Association Journal: (1)
“In medicine, the male has been viewed as normative in research, treatment, societal constructs and, until recently, health care provision. Most of us are aware that much of the published medical research has involved male subjects only.”
Perhaps the best-known example of such research – what Dr. Simkin in fact describes as “the height of ludicrousness” – was the 1986 study at New York City’s Rockefeller University on breast and uterine cancer.
Despite the clearly obvious reality of these malignancies in women, all of the subjects in this study were men.
Olympia Snowe, a Republican congresswoman at the time, observed:
“Somehow, I find it hard to believe that the male-dominated medical community would tolerate a study of prostate cancer that used only women as research subjects.”
As listed in the book Outrageous Practices: How Gender Bias Threatens Women’s Health by Leslie Laurence and Beth Weinhouse, other examples of landmark studies in which medical researchers somehow forgot to invite women include:
- the Baltimore Longitudinal Study, one of the largest at the time about the natural process of aging, began in 1958 and included no women for its first 20 years because, according to Gene Cohen, then deputy director of the National Institute on Aging, the facility in which the study was conducted had only one toilet. The study’s 1984 report, entitled “Normal Human Aging”, contained no data on women.
- the Physicians Health Study, which concluded that taking an aspirin a day might reduce the risk of heart disease, included 22,000 men and no women.
- the Multiple Risk Factor Intervention Trial, known as Mr. Fit, a longterm study of lifestyle factors related to cholesterol and heart disease, included 13,000 men and no women.
- a Harvard School of Public Health study investigating the possible link between caffeine consumption and heart disease involved over 45,000 men and no women.
- a study of 30 years worth of randomized clinical trials of drug therapy for heart attacks co-sponsored by the National Heart, Lung and Blood Institute found that fewer than 20 per cent of the patients studied were female.
Was that just how inexplicably lopsided the world of medical research has actually been? We do know that women’s participation in research until very recently has generally focused on what we call the ‘bikini approach‘ to our health: namely, breasts and reproductive organs (except, of course, for that Rockefeller study).
Laurence and Weinhouse explain:
“As far back as 1985, the U.S. Public Health Service warned that the lack of medical data on women was limiting the understanding of women’s health care needs.
“The following year, a National Institutes of Health advisory committee recommended that women always be included in NIH-sponsored clinical trials unless researchers could legitimately justify their exclusion.”
But in spite of these recommendations, women continued to be ignored by many researchers for decades. Even with ongoing efforts directed at physician education, studies revealed the same trends despite greater awareness of these sex-based biases.
The enormous implications of women’s historical exclusion from clinical trials have became apparent over time, as described here:
“The medical community did not know if the treatments proven safe and effective for men could be applied to women without modification.
“For example, physicians did not know precisely how to treat cardiac disease in women, or even how to recognize it. Case reports of undiagnosed chest pain, missed heart attacks, and ‘negligence’ on the part of physicians have thus been widely broadcast in the media.”
As a heart patient, I’m dismayed to tell you that these reports continue to come forward to this day. Even the name of the heart attack that I survived (what doctors still call the “widow maker”) clearly tells you what doctors believe about this cardiac event: it’s a man’s problem. They don’t, after all, call it the “widower” maker.
Worse, even when evidence-based diagnostic and treatment guidelines may help both male and female patients, we know that many women are not offered the same care that physicians would offer to male patients as part of standard treatment protocol. As Mayo Clinic’s Dr. Sharonne Hayes (cardiologist and founder of the Mayo Women’s Heart Clinic) explains:
“Part of the problem now is that the clinical practice guidelines are less likely to be applied to women compared to men.”
Medical journals have been particularly reluctant to admit to gender bias in the scientific papers they publish, according to Laurence and Weinhouse. Consider Dr. Marcia Angell, for example, the former executive editor of The New England Journal of Medicine, and an outspoken critic of Big Pharma’s profound influence on what’s often called marketing-based medicine.
But back in 1990, Dr. Angell openly dismissed the idea that excluding women from participating in medical research affected their health, saying:
“Gender bias is not serious in a way that distorts research. It doesn’t serve women well to see sexism where it doesn’t exist.”
Three years later, she seemed less adamant – but still unconvinced. Writing in a July, 22, 1993 editorial in the journal – long after all the reports listed above had been released – she said:
“Whether women have been inadequately studied is difficult to say.”
Difficult to say? How much evidence does Dr. Angell (widely known as a stickler for evidence-based medicine) need?
Is this issue simply one of ancient history? Surely medical research, education and practice have improved in light of growing awareness of the inappropriateness of gender bias?
Perhaps not. Los Angeles cardiologist Dr. Noel Bairey Merz, writing in the European Heart Journal, cited recent cardiac studies that appear truly disturbing (2):
“These studies demonstrate medical undertreatment of women, gender differences in use of cardiac procedures, and adverse clinical outcomes compared with men.”
In 2011, I attended the Canadian Cardiovascular Congress in Vancouver in order to interview researchers working on women’s heart health issues. What I learned was that gender bias is alive and well in cardiology. I was appalled, for example, to discover that, out of over 700 scientific papers presented at this conference, I could count on one hand those that focused even remotely on women’s heart disease.
The experience confirmed what I’d already learned three years earlier from Mayo Clinic cardiologists while participating in the WomenHeart Science & Leadership Symposium for Women With Heart Disease. During this training, a television news crew arrived to interview Dr. Sharonne Hayes. When reporters asked about her longterm goals for her Mayo Women’s Heart Clinic 10 years into the future, her blunt response was:
“By then, I hope there won’t even be a need for a women’s heart clinic anymore.”
Her hope, in other words, was that women’s cardiac care will one day become so integrated into the practice of cardiology that both men and women would be receiving a comparable quality of diagnostics and treatment. That is not yet the reality today.
Dr. Ruth Simkin wrote of a similar hope in her CMAJ editorial:
“Women’s health is akin to feminism: one wishes it could become obsolete, unnecessary, so well-integrated into everyday life that we would not even have to think about it.
“But women’s health is still ‘other’, something about which we need to write papers, hold conferences, discuss the ramifications of. “
And although Dr. Simkin wrote her CMAJ editorial several years ago, she recently wrote this follow-up note to me about it:
“This was written in 1995, but the situation really hasn’t changed all that much. The content of the editorial certainly applies to all that I do know now.
“I find it interesting in a very sad sort of way that decades have gone by, and yet there are still some of us who are saying the same old thing.”
DISCLOSURE: Dr. Ruth Simkin is a former colleague from our years together at the Victoria Hospice Society. Thanks so much, Ruth, for sharing your CMAJ editorial with me, and for introducing me to the book, Outrageous Practices: How Gender Bias Threatens Women’s Health.
- Are women being left behind in cardiac research?
- Yentl Syndrome: cardiology’s gender gap is alive and well
- Heart device studies still leave women out of the equation
- Cardiac research: where did all the women go?
- The tarnished reputation of university research
(1) Canadian Medical Association Journal, February 15, 1995, 152(4)
(2) European Heart Journal. doi:10.1093/eurheartj/ehr083