by Carolyn Thomas ♥ @HeartSisters
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 on my first day 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 1989 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. It wasn’t until 2005 that the Women’s Health Study disputed those findings in women. See more on this now-controversial aspirin recommendation for women here and 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.
NOTE FROM CAROLYN: Other highly recommended books on a similar theme are:
Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery
Invisible Women: Data Bias in a World Designed For Men by Caroline Criado Perez (winner of the 2019 Royal Society Science award)
Sex Matters: How Male-Centric Medicine Endangers Women’s Health, by Dr. Alyson McGregor.
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 called Unconscious Bias: Why Women Don’t Get the Same Care Men Do.
Consider also a scathingly frank 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 the history of women’s heart disease prevention, diagnosis and treatment, cardiac research until very recently has largely been performed in populations of (white, middle-aged) men – with women either excluded, or included in statistically insignificant numbers. See also: Is It Enough to Have “Enough” Women in Cardiac Studies?
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, 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 this blog post about the 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.
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 other symptoms such as shortness of breath, nausea or vomiting, and back or jaw pain.” Note that this was the AHA’s first ever scientific statement on women’s heart attacks in its NINETY-TWO YEAR HISTORY!
Q: Are you optimistic that researchers are doing better at investigating women’s heart issues?
NOTE FROM CAROLYN: I wrote much more about the cardiology gender gap in my book, “A Woman’s Guide to Living with Heart Disease” . You can ask for it at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher, Johns Hopkins University Press (use the JHUP code HTWN to save 30% off the list price when you order).
(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:
(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
The symptomatic tipping point during heart attack*
The sad reality of women’s heart disease hits home*
Women under age 55 fare worse after heart attack than men*
Researchers openly mock the ‘myth’ of women’s unique heart attack symptoms*
Why female shift workers may be at risk for heart disease*
Is it enough to have “enough” women in cardiac studies?
Cardiac gender bias: we need less TALK and more WALK
Women’s cardiac care: is it gender difference – or gender bias?
Unconscious bias: why women don’t get the same care men do
How can we get heart patients past the E.R. gatekeepers?
Heart disease – not just a man’s disease anymore
When your doctor mislabels you as an “anxious female”
Why are women with atrial fibrillation treated differently?
Women missing the beat: are doctors ignoring women’s cardiac symptoms?
Yentl Syndrome: cardiology’s gender gap is alive and well
The breast/uterine cancer study with no women invited (from my other site, The Ethical Nag: Marketing Ethics for the Easily Swayed)
* Heart Sisters posts written about cardiac research presented during the 2011 or 2014 Canadian Cardiovascular Congress in Vancouver, British Columbia, Canada
21 thoughts on “How gender bias threatens women’s health”
I’m a healthy 42 year old woman. Never smoked, never drank, never did any kinds of drugs. 8 months ago I started to feel pain in my chest, left armpit and left jaw. I saw a cardiologist who took an EKG, stress test (no dye), echo, and all was considered normal.
I still had pains weeks later so I went to urgent care. They did a chest X-ray, all normal. My pains increasingly grew worse over time, now I started to feel pain down my whole left arm not just in the armpit. And I also started to experience shortness of breath often.
So I went to the ER at some point when I felt extreme difficulty breathing, numbness in my upper lip and feet. They too sent me home telling me I have anxiety, which I have nothing in my life making me feel anxious. I then went to my internist who is also a pulmonologist – he took a breath test and said all is normal.
I continue to have daily pain in my chest, arm, jaw and have trouble catching my breath. I called my cardiologist asking him to please prescribe a CT but he does not think I have any need for it and told me to see a neurologist. I’m going next week to the neurologist but honestly all I can think is this is such craziness.
I’m a healthy person, why am I having daily pains that seem to mimic heart attack symptoms. What should I do? I don’t want to be one of those non-statistical anomalies. Please let me know your advice what kinds of tests should I take?
LikeLiked by 1 person
Hello Jennifer – I’m not a physician so cannot comment specifically on your very distressing experiences. Right now, you just don’t know if your symptoms are heart-related or not. It might help you to know that 85% of all those admitted to hospital for chest pain (meaning that at least some of their diagnostic tests DID come back suspicious enough to recommend further cardiac care) turned out not to be heart-related after all. I can say, generally, that it seems you have had every possible cardiac test currently available so far. If I were in your shoes, I’d start a symptom journal right away: jot down the date, time, and what you were doing/feeling/eating in the couple of hours leading up to a specific symptom. This kind of record can be surprisingly good at revealing certain patterns that can help you and your doctors solve the mystery. To rule out cardiac causes, if you continue to experience these symptoms, consider making an appointment with a women’s heart clinic where they are more experienced in specific female issues.
LikeLiked by 1 person
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.
LikeLiked by 1 person
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.
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.
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.
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.
LikeLiked by 1 person
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.
In addition to gender issues, there are also age issues.
LikeLiked by 1 person
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.
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)
LikeLiked by 1 person
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 the highly recommended site Number Needed To Treat explains:
“The harms of statins are less publicized than benefits, but are well documented.”
LikeLiked by 1 person
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.”
YIKES!! Let’s start with MY golden rule. Keep that guy away from ME!!
LikeLiked by 1 person
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.”
LikeLiked by 1 person
Amen to that, Judy-Judith….
Thanks for this.
LikeLiked by 1 person
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.
LikeLiked by 1 person
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.”