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 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 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 published recently 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, and Invisible Women: Data Bias in a World Designed For Men by Caroline Criado Perez (winner of the 2019 Royal Society Science award).
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 20% 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
* Heart Sisters posts written about cardiac research presented during the 2011 or 2014 Canadian Cardiovascular Congress in Vancouver, British Columbia, Canada