How gender bias threatens women’s health

26 Oct

by Carolyn Thomas  @HeartSisters

Three years ago, I attended the 64th annual Canadian Cardiovascular Congress – not as a participant, but with media accreditation in order to report on the proceedings for my blog readers.  I arrived at the gorgeous Vancouver Convention Centre feeling excited to interview as many of the cardiac researchers attending this conference as I could squeeze into my 2-day schedule – particularly all the ones studying women’s heart disease.  I was gobsmacked, however, when conference organizers in the Media Centre told me that, out of hundreds of cardiology papers being presented that year, I’d be able to “count on one hand” the number of those studies that had anything even remotely to do with the subject of women and heart disease. Essentially, that appalling gender gap then became the Big Story of the conference for me. And every one of those four lonely little studies shared a conclusion that I already knew: when it comes to heart disease, women fare worse than men do.*  See also: The Sad Reality of Women’s Heart Disease Hits Home.

But already, I can tell that this weekend’s annual Congress (once again back in Vancouver) should do better.  This year, the 192-page conference program lists over a dozen studies reporting specifically on women’s experience of heart disease.(1)  Sounds good – until you remember that it’s a puny drop in the bucket for an international conference where over 500 original new scientific papers are being presented about a diagnosis that has killed more women than men every year since 1984.

Once again, I am reminded this weekend of the book called Outrageous Practices: How Gender Bias Threatens Women’s Health.

This compelling book, written by medical journalists Leslie Laurence and Beth Weinhouse, contains a mind-numbing history lesson of landmark studies in which medical researchers somehow forgot to invite women. These include:

  • the Baltimore Longitudinal Study, one of the largest at the time about the natural process of aging, included no women for its first 20 years because, according to the National Institute on Aging, the facility in which the study was conducted had only one toilet. The study’s final report, entitled “Normal Human Aging”, contained no data on women.
  • the Physicians Health Study, which concluded that taking an aspirin a day would reduce the risk of heart disease, included 22,000 men and no women.  See more on this now-controversial recommendation here.
  • 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.

But without a doubt, my very favourite story cited in this book was one that Victoria physician Dr. Ruth Simkin repeated in a classic editorial entitled Women’s Health: Time for a Redefinition published in The Canadian Medical Association Journal:(2)

Dr. Ruth described this story as “the height of ludicrousness”. It’s about a 1986 study from New York City’s Rockefeller University on breast and uterine cancer, published in the Journal of the National Cancer Institute. Despite the clearly obvious reality of these malignancies in women, all of the subjects in this study were men.

Let me repeat: the study was about breast and uterine cancer. Olympia Snowe, a U.S. 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.”

Was this actually how inexplicably lopsided the focus of physicians and academics working in medical research was back then? And if so, what were they thinking?

We do know that women’s participation in health research until surprisingly recently has generally concentrated on what we call the bikini approach to health care: namely, breasts and reproductive organs (except, of course, for that Rockefeller study). But as 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.”

In spite of this recommendation, women continued to be ignored by many researchers for decades. Even with ongoing efforts directed at physician education, studies revealed this disturbing trend – despite growing awareness of these sex-based biases. The enormous implications of women’s historical exclusion from clinical trials became apparent over time, described like this by Laurence and Weinhouse:

“The medical community simply 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 symptoms, missed heart attacks, and ‘negligence’ on the part of physicians have thus been widely reported.”

As a heart patient, I’m dismayed to tell you that these reports continue to come forward to this day.

And I’m not the only one feeling dismayed. Many physicians are coming forward to sound the alarm on the unacceptable disparity in women’s health care. Read some of the shocking observations from Mayo Clinic’s Dr. Mary O’Connor, for example, quoted in this essay last summer called Unconscious Bias: Why Women Don’t Get the Same Care Men Do

Consider also a scathingly frank 2011 editorial about female heart patients published in the European Heart Journal that observed:(3)

“Studies demonstrate medical under-treatment of women, gender differences in use of cardiac procedures, and adverse clinical outcomes compared with men.

As Laurence and Weinhouse outline, despite shocking statistics on women’s heart disease, research on prevention, diagnosis and treatment of heart disease until very recently has largely been performed in populations of (white, middle-aged) men –  with women either excluded, or included in statistically insignificant numbers.

And to the surprise of no woman who has ever been misdiagnosed in mid-heart attack and sent home from Emergency as I was, the end result of decades of this neglect continues to play out today Cardiovascular disease is diagnosed in the first place using diagnostic tools that work pretty well in male patients because these tools have been designed, developed and researched on men. This reality may help to explain why women under age 55 are seven times more likely to be misdiagnosed in mid-heart attack and sent home from Emergency.(4)

Here’s another example: when controversial new U.S. heart disease treatment guidelines were launched in 2013 (motto: “If you have a detectable pulse, you should be taking statins!”), we learned that some of the most influential studies on the cholesterol-management drugs called statins (Lipitor, Crestor, Zocor, etc.) included inadequate data about women.

Even the massive 2008 pro-statin JUPITER study showed there was “no treatment benefit” when women who took statins were studied as a subgroup. Los Angeles cardiologist Dr. Noel Bairey Merz (coincidentally also a co-author of the new guidelines) conceded at the time that the evidence isn’t perfect” and that “there are no clinical trials of statin use in women alone”. 

Yet despite this admitted gap in sex-based evidence, her opinion remained that even healthy women with no history of heart disease should still take statins for primary prevention anyway as long as this (allegedly) flawed new heart disease risk calculator says they should.  For a differing perspective, see: Women, Controversial Statin Guidelines, and Common Sense.

Worse, even when evidence-based diagnostic and treatment guidelines may help both male and female patients, we know that many women are still not offered the same care that physicians would offer to male patients as part of standard treatment protocol.

When asked if we need new cardiac treatment guidelines specifically written for women, cardiologist Dr. Sharonne Hayes, founder of the Mayo Women’s Heart Clinic, warned:

“Part of the problem now is that current clinical practice guidelines are less likely to be applied to women compared to men.”

So let me get this straight: not only are women in cardiac distress under-diagnosed compared to our male counterparts, but we’re also under-treated even when appropriately diagnosed. And even when clinical practice guidelines are in common usage by our doctors, they are not necessarily applied during the care of women presenting with heart disease symptoms. If you’re wondering what to make of this insanity, consider how heart attack survivor and women’s heart health advocate Laura Haywood-Cory summed it up succinctly in her response to my 2011 blog post about that year’s Canadian Cardiovascular Congress:

“We really don’t need yet another study that basically comes down to: Sucks to be female. Better luck next life!’, do we?”

Well, Laura – apparently we do. 

IMPORTANT UPDATE:

January 31, 2016:   The American Heart Association released its first ever scientific statement on women’s heart attacks, confirming that “compared to men, women tend to be undertreated, and including this finding: “While the most common heart attack symptom is chest pain or discomfort for both sexes, women are more likely to have atypical symptoms such as shortness of breath, nausea or vomiting, and back or jaw pain.”

Q:  Are you optimistic that researchers are doing better at investigating women’s heart issues?

(1) Sampling of papers that include women’s heart health issues presented at the 67th Annual Canadian Cardiovascular Congress, Vancouver, BC –  October 25–28, 2014:
Kreatsoulas C et al. The Symptomatic Tipping Point: factors that prompt men and women to seek medical care.  Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014. Oral presentation 158.
Chou AY et al. Cardiac rehabilitation protocol for patients with spontaneous coronary artery dissection. Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014. Poster 021-021.
Daniele P et al. Balloon or needle: Sex differences in STEMI treatment. Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014. Poster 030-030.
Izadnegahdar M et al. Sex differences and changes in health status of young adults during the first year following acute myocardial infarction. Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014. Poster 026-026.
Humphries KH et al. Are fewer women tested for cardiac troponin when presenting with chest pain? Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014. Poster 028-028.
Pelletier R et al.  Gender, sex and outcomes in patients with premature acute coronary syndrome. Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014. Oral presentation 217.
Young L et al. Mid-life men and women’s recovery work following a first MI: Are their needs being met? Canadian Council of Cardiovascular Nurses. Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014.
Panchuk K et al. Sex and gender in heart disease prevention: Considering the impact of polycystic ovary syndrome. Canadian Council of Cardiovascular Nurses. Canadian Cardiovascular Congress. Vancouver: Oct 25–28, 2014.
(2)  Simkin, R. Women’s health: time for a redefinition. Canadian Medical Journal. CMAJ February, 1995 vol. 152 no. 4 477-479
(3) Editorial. European Heart Journal. 1313-1315 10 March 2011 (4)  Pope JH, Aufderheide TP, Ruthazer R, et al. Missed diagnoses of acute cardiac ischemia in the emergency department. N Engl J Med. 2000; 342:1163-1170

See also:

* Heart Sisters posts written about cardiac research presented during the 2011 or 2014 Canadian Cardiovascular Congress in Vancouver, BC Canada
.

19 Responses to “How gender bias threatens women’s health”

  1. Irene November 14, 2014 at 10:22 pm #

    Carolyn, reading one of your tweets today, as well as this, I realize how lucky I am with my family doctor. He has never ignored anything with me, and even suggested I might have heart problems when I thought it was just exercise induced asthma. Unfortunately he was right.

    However, the cardiologist experience has been different. The first one (an internist) I saw 10 years ago did send me for a number of tests but then stopped, saying that this was just something that showed up in “women your age” and did not pursue it further.

    The next one I saw two years ago saw the same results, did not ignore them – said that this can sometimes hide something else, and sent me for further tests. It turned out I have cardiomyopathy. I am pretty sure that I had this 10 years earlier, when it was milder, and perhaps if treatment had started sooner progress would be better.

    My current cardiologist is better than the first, but really not very communicative about my status, and what the future might look like.

    Liked by 1 person

    • Carolyn Thomas November 15, 2014 at 5:03 am #

      Thanks for sharing your own experience, Irene. You’ve just described a whole range of physician behaviour, from interested to dismissive to keen to “non-communicative”. A good example of why patients need to be our own best advocates for our health.

      Like

      • Irene November 15, 2014 at 8:34 am #

        Thanks Carolyn. And it is only now, at this late stage in life, that I am learning to be my own advocate. Well, better late than never, I guess.

        Like

  2. Daryle Ann Corr October 28, 2014 at 8:44 am #

    I made a point of having a female primary care doctor; I figured a woman had to work twice as hard, competitively, to get through medical school.

    Hope your ‘festival’ show was a smash!

    I ended up taking a Psychology class this semester: Personality: theory & research. Jane’s taking a campus class, too–one on poetry; Ellen’s been taking Italian lessons. Will send you a sideline from mine.

    D

    Like

  3. Michelle October 27, 2014 at 5:58 pm #

    Luckily my male cardiologist listened to me when I told him about the pain in my legs from the statin I was taking and took me off of it. I always say to him: women are different when it comes to heart problems.

    What is scary is the recent study on digoxin where there were no females in the trial. I am on that stuff and it said it wasn’t good for people with afib. I simply could not tolerate Coreg even take the smallest dose possible. Now I don’t know what to think.

    Michelle

    Liked by 1 person

    • Carolyn Thomas October 27, 2014 at 9:02 pm #

      Hi Michelle – recent studies on digoxin are indeed scary and confusing. My understanding is that until recently, most studies on digoxin – a heart rate-controlling drug – were done on patients living with heart failure, not atrial fibrillation. Electrophysiologist Dr. John Mandrola shared his opinion about the controversial AFFIRM study in his Medscape column called “Trials & Fibrillations” (for some reason, the link to the original is dead, but you can find the text cut-and-pasted into comment #21 from pacyetep. By the way, about 40% of all study participants were female.

      “(Digoxin) has a long half-life, slow onset of action, and numerous drug interactions and is excreted by the kidneys. Since many patients with AF take other meds and have other diseases, this is a real problem…. An aggressive rate-control strategy in AF offers little benefit over a more lenient strategy. This makes it less imperative to pour rate-controlling AF medicines into our patients. It lessens the need for digoxin.”

      Yet a more recent study published in the European Heart Journal (40% of their participants were also women) concluded: “In patients with paroxysmal and persistent AF, we found no evidence of increased mortality or hospitalization in those taking digoxin as baseline initial therapy.”

      I hope your cardiologist is an electrophysiologist who can help you make good decisions about your own case.

      Like

  4. Nitro Mama October 27, 2014 at 2:38 pm #

    In addition to gender issues, there are also age issues.

    Liked by 1 person

    • Carolyn Thomas October 27, 2014 at 8:24 pm #

      Absolutely true in research. In a 1969 article called “Philosophical Reflections on Experimenting with Human Subjects” published in the Journal of the American Academy of Arts and Sciences, Hans Jonas warned doctors about ethical concerns in “exploiting” the frail, vulnerable elderly by including them in research: “The afflicted should not be called upon to bear additional burden and risk [involved in clinical trials].” Consider also that many older patients are likely to have what researchers call “co-morbidities” (the simultaneous presence of two or more chronic diseases or conditions) which can really muck up your study sample.

      Like

  5. JetGirl October 27, 2014 at 12:39 am #

    Hi Carolyn,

    A small sidebar about statins . . . Women are more likely to have adverse reactions to statin use, but how many of us have been told just soldier on?? I finally took myself off statins – the pain in my legs was so bad. (Yes, back before the miracle)

    JG

    Liked by 1 person

    • Carolyn Thomas October 27, 2014 at 6:51 am #

      Hi JG – I too have noticed that for years, women’s reports about statin side effects (especially severe leg pain) have been essentially dismissed by their physicians until only very recently. But as Dr. David Newman observes in the highly recommended site Number Needed To Treat:

      “The harms of statins are less publicized than benefits, but are well documented.”

      Liked by 1 person

    • Carolyn Thomas April 8, 2015 at 7:12 pm #

      JG, here’s an update that should curl your hair: recently, a European panel of cardiac experts released a new consensus statement to advise physicians on how to deal with patients who develop muscle symptoms while taking statins. The lead author Dr. Erik Stroes from the European Atherosclerosis Society said on March 25, 2015 (out loud, and apparently with a straight face):

      “Let’s start with the golden rule. Never stop using your statin.”

      Like

      • JetGirl April 8, 2015 at 8:52 pm #

        YIKES!! Let’s start with MY golden rule. Keep that guy away from ME!!

        Liked by 1 person

  6. CuriositytotheMax October 26, 2014 at 4:26 pm #

    My Mother was much wiser than I realized at the time. She would say, and I quote: “If there is such a thing as reincarnation I want to come back as a 32 year old, healthy, wealthy bachelor.”

    Liked by 1 person

  7. jmdowns2013 October 26, 2014 at 1:11 pm #

    Thanks for this.

    Liked by 1 person

  8. The Accidental Amazon October 26, 2014 at 11:58 am #

    Carolyn, all I can do is shake my head at this idiocy, and yet I don’t think many people realize just how extensive research gender bias still is. That study about breast and uterine cancer really takes the cake.

    In cancer research, there is another frustrating bias against metastatic cancer, with the overwhelming percentage of studies devoted to everything but stage IV cancer, which is, after all, what kills people. Nuts.

    Thank you again for another excellent post. I will certainly be sharing it.
    Kathi

    Liked by 1 person

    • Carolyn Thomas October 26, 2014 at 12:12 pm #

      Thanks for weighing in here, Kathi. Sadly true about lack of research in late stage cancer, as the American Cancer Society’s Scientific Council famously reported: “Fewer than 8% of cancer researchers even mention the word ‘metastasis’ in their grant applications.”

      Like

Trackbacks/Pingbacks

  1. David Scher, MD - The Digital Health Corner - April 8, 2015

    […] foundation of evidence-based clinical trials.  Some of these cracks may be due to well-publicized gender bias possibly related to recruitment practices (see below). These biases have been recognized by […]

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  2. Always Well Within - October 29, 2014

    […] Unbelievable!  How Gender Bias Threatens Women’s Health: Carolyn Thomas at Heart Sisters […]

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