The breast/uterine cancer study with no women invited

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.”

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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.

.

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See also:

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(1) Canadian Medical Association Journal, February 15, 1995, 152(4)

(2) European Heart Journal. doi:10.1093/eurheartj/ehr083

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19 thoughts on “The breast/uterine cancer study with no women invited

  1. “Despite the clearly obvious reality of these malignancies (Uterus and breast) in women, all of the subjects in this study were men.”
    1st of April ??
    Where is that study?

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    • It does sound like an April Fool’s joke, but apparently it was not. As published in the Journal of the National Cancer Institute, this pilot project at Rockefeller reported: “Estrogen levels were measured before and after oral consumption of the dietary cytochrome P450 inducer indole-3-carbinol (I3C). Urine samples were collected from subjects before and after oral ingestion of I3C (6–7 mg/kg per day). Seven men received I3C for 1 week. Implications: I3C may have chemopreventive activity against breast cancer in humans, although the long-term effects of higher catechol estrogen levels in women require further investigation.”

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  2. Years ago I had appalling personal experience of gender bias in respect of serious dental problems! As a member of Mensa, I wrote this article about it for Mensa UK’s monthly magazine:

    Someone sent a copy of the article to a former Chair of the Patients Association (a woman) and she wrote to me commending it. She also wrote, “I certainly remember a number of cases from my days at the Patients Association of patients with intractable dental pain who were treated as neurotic or frankly loony – and all women. They were laughed at, insulted and generally had a rotten time.”

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    • Margaret, that is quite the horror story of your misdiagnosis at the hands of that dentist, particularly his sweeping dismissal of ‘You fat depressives’. You are quite correct in your theory that women’s severe symptoms are more frequently blown off compared to men’s. The New England Journal of Medicine reported that women are seven times more likely to be misdiagnosed in mid-heart attack and sent home from Emergency compared to our male counterparts presenting with identical symptoms. But even when we successfully get past the Emergency Department gatekeepers, the treatments women are offered are far less than what’s offered to men. More on this reality at: Gender Differences in Heart Attack Treatment Contribute to Women’s Higher Death Rates

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  3. Carolyn – great post as usual. I loved the comment about “one toilet”. Since men can pee standing up, they should just have peed out the window and given the one toilet to the women!

    Seriously, it is a good post but oh, so sad that fifty years ago, all the things about which we “strident feminists” were screaming still exist today. Did we even make a difference? I guess we sort of did, since we can talk about the situation and today most people understand the problem. Fifty years ago, they didn’t. Here’s hoping things will be different before another fifty years pass…..
    Ruth

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  4. Bias against women in the medical field, and for women in the justice system….the prevailing wind has historically favored men in all things. With the modernization of workplace discrimination it has made it easier for young women seeking employment. However when it speaks of age, no bias is discernible – everyone is discriminated against equally.

    God bless.

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  5. Was the study about “breast and uterine cancer” or about the metabolism of I3C ?
    The discussion of results suggests that from the information on metabolism of I3C, theoretical inferences were drawn about its probable role in cancer. Were the subjects perhaps medical students? They make good experimental animals, and you don’t need to destroy them painlessly at conclusion. Also, we used to volunteer happily when I was at med school.

    I’m now a retired doctor.

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    • We don’t know if the 13C study was done on those ‘experimental animals’ called med students – but given that their theoretical inferences reported on “chemopreventive activity against breast cancer in humans”, one wonders why they hadn’t selected female med students?!

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      • In several experimental studies while we were students, 24 hour urine collections were analysed. Mostly, the men were more willing to carry a large bottle around all day than were the women. Also, in those days(1950s), women made up about 15% of our class, so there were fewer possible volunteers.

        Liked by 1 person

        • Good point. And although the Rockefeller study was done 35 years after your med school days, it’s interesting to note that women still made up only about 15% of medical school classes in the 1980s. But still . . . !

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  6. This would almost be comical, if it didn’t still have implications for the treatment of women’s health today. There are still so many entrenched and outdated notions about our health issues among physicians today. The over-prescribing of statins & the treatment of cardiac issues are just a few of them.

    Over the past year in the U.S., it seems that our elected officials are repeating this trend over and over by legislating health decisions affecting women via committees that have no women on them. *sigh*

    Great post as usual, Carolyn.

    Kathi

    Liked by 1 person

    • I agree, Kathi. One of the most glaring examples of this failure to include those most affected by health care was a recent medical panel on reconstructive surgery following mastectomy – that included NO patients.
      *sigh* …

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  8. Hi Carolyn, Another terrific post. I agree with Kathi. It would be comical if only…

    It seems there is still much work to be done in the area of gender equality in this realm too.

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  9. Reblogged this on winterdominatrix and commented:
    Male privilege in the medical; field. How sad that we are still not given equal status as men. Women are just as likely to suffer from heart disease, yet, it is called a man’s disease, much in the way AIDS was peddled while women died. Women are only studied for reproduction and little attention goes to any other organs, as if we dont have them! Or we are walking baby factories that self produce milk.. we are not really considered humans for not being born male and for some reason, women are separated from the rest of humanity and work twice as hard to attain half of what males are offered. ….If you are a childless woman, no health care for you, unless you want some birth control pills! Want birth control pills? The condom-less form of birth control preferred by males- of course there will be money for that, oh, and And Viagra..Viagra was funded faster and pushed to be on the market faster than any drug I can recall. and BTW, Besides recreational use, viagra has no life-saving medical use.
    Men and their interests are first, children & elders next, and the woman is again the lowest priority for basic care. We are only missed by our children after we are gone. Perhaps they should publish medical studies on women based on what they died from.

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