“A decade of lost ground“ is how the official commentary from the American Heart Association bluntly described the stunningly awful results of its own 2019 National Survey on women’s heart disease awareness reported last month. I wrote about my own stunned reaction to this survey in Women’s Heart Disease: an Awareness Campaign Fail?
The results were astonishing. They suggested that women not only had a low awareness of even the most basic facts about heart disease – the #1 killer of women worldwide – but awareness levels were significantly lower than an AHA awareness survey had found 10 years earlier. . . . .
Here are the key highlights (or, lowlights) of the AHA commentary in response to their survey:
1. “Decline in awareness was most evident among women aged 25-34 years. While this age group has the lowest incidence of cardiovascular disease, it stands to benefit the most from early preventive and educational strategies that can change their health trajectory tremendously.”
2. “It is alarming that women’s knowledge of heart disease as our leading cause of death decreased even in those with cardiovascular risk factors. Women with high blood pressure, for example, had 30 per cent lower awareness than women without high blood pressure.
3. “For nearly every heart attack symptom, fewer women in 2019 were able to identify possible warning signs compared to a decade earlier – even chest pain.
And overall, survey responses from racialized minority women showed lower awareness levels compared to white women. More women across the board mistakenly believed that breast cancer is our leading cause of death – especially in that 25-34 age group.
For the bad news summary, read the AHA’s Top Things to Know: Ten-Year Differences in Women’s Awareness Related to Coronary Heart Disease
The AHA response commentary was co-written by three cardiologists: Drs. Laxmi Mehta (Ohio State University) plus Garima Sharma and Roger Blumenthal* (both from the Johns Hopkins Ciccarone Center for Prevention of Cardiovascular Disease, Johns Hopkins University School of Medicine).
No matter how you slice it, such dramatic declines in women’s heart health awareness are essentially telling us that whatever we’re doing to raise awareness, it’s not working.
And that’s also what I learned from academics Ann Christiano and Annie Neimand at the University of Florida’s Center for Public Interest Communications.
As they wrote in their article called Stop Raising Awareness Already, published in the Stanford Social Innovation Review:
“Because abundant research shows that people who are simply given more information are unlikely to change their beliefs or behavior, it’s time for activists and organizations seeking to drive change in the public interest to move beyond just raising awareness.”
And isn’t changing beliefs or behaviours the reason we try to raise awareness in the first place?
Christiano and Neimand take a cautious view of most awareness-raising campaigns, describing them as “wasting a lot of time and money for important causes that can’t afford to sacrifice either.”
So if that discouraging perspective is even remotely accurate (after that AHA survey report, it certainly seems to be), we have to stop assuming that doing things the same way we’ve always done them will work better this time.
How It All Started. . .
Back in 2002, the National Heart Lung and Blood Institute launched The Heart Truth®, the first government-sponsored national campaign aimed at increasing awareness among women about their risk of heart disease. The cost of this first heart disease awareness-raising campaign aimed at women was $17.7 million.
Two years later, the American Heart Association began its own Go Red For Women® awareness-raising campaign. A similar campaign was later promoted here in Canada by the Heart and Stroke Foundation. In 2011, Go Red For Women® launched the brilliant Elizabeth Banks 3-minute film called “Just a Little Heart Attack“. The distinctive red dress symbol of the campaigns is a trademark of the U.S. Department of Health and Human Services.
Since then, we’ve all been wearing our little Red Dress® lapel pins, and watching celebrity models on the Red Dress Collection® fashion show runways in New York City, and celebrating Heart Month by wearing red on one special day in February.
How could years of awareness-raising efforts fail to move the needle on the very cause that launched these assorted awareness campaigns in the first place?
Move the needle? That needle has broken right off. . .
Zero Interest. . .
After I had to have a wee lie-down to recover from reading those demoralizing survey results, I realized that, had I been surveyed before my own heart attack in 2008, my own responses to questions about women’s heart disease would have been as shockingly ill-informed.
Before my heart attack, I had absolutely no interest in the subject of cardiovascular disease, any more than I would have had in lupus or anemia or any other medical condition that did not affect me or somebody I care about. Back then, I know I would never have even signed up to attend one of my own Heart-Smart Women talks!
I may have accidentally stumbled upon a catchy Red Dress® ad or celebrity interview, but I wouldn’t have taken a second look – unless the subject mattered to me. And as a person who had been a healthy distance runner for 19 years, I didn’t ever see myself as a person at risk for heart disease.
Heart disease did not matter to me until it happened to me.
While all awareness campaigns try to overcome this inherent lack of interest, it’s hard to break through this first barrier: convincing somebody that this should be of interest. What will instantly boost interest is when you or somebody you love is diagnosed. Suddenly, it matters.
Meanwhile, here in Canada. . . 🇨🇦
I asked Teresa Roncon, the Senior Manager of Communications at Canada’s Heart and Stroke Foundation (essentially the counterpart of the AHA) about her agency’s take on the distressing AHA survey results.
Women’s declining awareness of how cardiovascular disease affects them is a documented global issue, she responded – not just a North American aberration:
“This lack of awareness is deeply concerning, and it is costing women their lives.”
Heart and Stroke co-authored a 2020 report called The State of the Science in Women’s Cardiovascular Disease , concluding that Canadian women are “vastly under-aware of the threat they face from heart disease.”
This report also took specific aim at what they called“the stunning lack of research specifically oriented to women and the under‐representation of women in cardiovascular disease research studies.”
This stunning lack, they warn, contributes to “the under-recognition, under‐diagnosis, under‐treatment, and under‐support of women with cardiovascular disease.”
One part of closing this gender gap squarely targets healthcare professionals, as Teresa Roncon described H&S’s ongoing funding of cardiac research in women:
“More equitable research will provide medical professionals with the tools they need to properly diagnose and treat women.
“Once our clinicians are equipped with better knowledge, they can have more informed discussions with their women patients, in turn raising awareness at a patient/doctor level.”
Focus on doctors, not on women . . .
Coincidentally, that pivot toward physicians is also what the three cardiologists who penned the official AHA commentary included at the top of their own list of “long established reasons for this sex gap” – reasons that need to be addressed if this gap is ever to be closed:
- decreased physician awareness of cardiovascular disease risk in women
- lack of focused curricula in cardiovascular training on sex specific risk factors for cardiovascular disease
- absence of competencies requirements in cardiovascular disease during pregnancy
- persistent knowledge gaps within the medical community in understanding the differences in cardiovascular disease in women
At first blush, it may seem unfair to clinicians to be pointed out as the obstacle preventing their female patients from improved awareness of their own risk of heart disease.
But I only had to look as far as the New York Times article last year on Spontaneous Coronary Artery Dissection. See also: “Is SCAD rare? Or Just Rarely Diagnosed Correctly?”
This is not news. This is a predictable reality.
It wasn’t the NYT article that shocked me, but rather the reader responses from physicians. Most flatly denied a gender gap in medicine (a defensive insistence we know to be demonstrably false, usually provided by male docs). Here are just a few of the reader comments:
◊ Chris (New Jersey): “I work in an emergency room. No one’s symptoms are trivialized because of their gender. That is absolutely ridiculous.”
◊ KSK (Maine): “I am an Emergency physician. I am aware of bias in medicine against certain groups and I strive to avoid it in my own practice, but I feel articles like this confuse bias with diseases that are difficult to diagnosis. I am not sure how much of a role gender bias plays.”
◊ John Wesley (Baltimore, MD): “…Heart attacks in 40-year old postpartum women simply don’t commonly get ‘written off’ by sexist, uncaring doctors. It has nothing to do with medical school curriculum, physician ‘wokeness’ or mysogyny.”
◊ James Strickland (Wilson, NC): “This is an inflammatory article that has no basis for declaring there is gender bias…”
These responses from members of the medical profession are no surprise to any women (like me) who have been misdiagnosed in mid-heart attack and sent home from Emergency. The evidence is clear on this; emerging studies, treatment guidelines and scientific statements continue to confirm an implicit gender bias that exists not only in cardiology but across all sectors of medicine. (For recent examples, see the list at the end of this post).
As my heart sister Laura Haywood-Cory (who survived her own SCAD heart attack at age 40) likes to say whenever yet another study is published pointing out cardiology’s gender bias:
“Sucks to be female. Better luck next life.”
Perhaps both the Heart and Stroke response and the official AHA commentary response are identical for a reason?
Maybe instead of ramping up information-heavy campaigns on heart health awareness aimed at women (which is not only ineffective, but getting worse results than 10 years ago), it’s the medical profession that needs to be significantly involved – starting back in medical school.
I’m just a dull-witted heart patient. I don’t know the answers. All I know is that doing the same thing because that’s the way we’ve always done it needs a complete rehab.
NOTE from CAROLYN: I wrote about what to expect when you become a heart patient in my book. “A Woman’s Guide to Living with Heart Disease“ was published by Johns Hopkins University Press in 2017. You can ask for it at your local library or favourite bookshop, or order it online (paperback, hardcover or e-book) at Amazon, or order it directly from my publisher (use their code HTWN to save 30% off the list price).
* Full disclosure: cardiologist Dr. Roger Blumenthal (one of the three cardiologists who wrote the AHA response commentary) wrote a lovely review of my book when it was published.
Q: Do you agree with the AHA commentary that we’ve had a ‘decade of lost ground’ in women’s awareness?
– The American Heart Association 2019 National Survey published in the journal Circulation: “Ten-Year Differences in Women’s Awareness Related to Coronary Heart Disease: Results of the 2019 American Heart Association National Survey: a Special Report from the American Heart Association”: September 21, 2020.
– Commentary in response to the Ten Year Differences survey report: “A Decade of Lost Ground in the Awareness of Heart Disease Symptoms in Women: A Call to Action“: September 21, 2020.
– “Cardiovascular Disease and the Female Disadvantage“ – a 2019 study from Professor Mark Woodward, Oxford
–“Research in Women’s Cardiovascular Health—Progress at Last?” – a 2018 study by Drs. Louise Pilote and Karin Humphries, published in the Canadian Journal of Cardiology
–“Impact of Initial Hospital Diagnosis on Mortality for Acute Myocardial Infarction: A National Cohort Study.” – a 2018 study by Professor Chris Gale et al, published in the European Heart Journal, in which he concludes: “This research clearly shows that women are at a higher risk of being misdiagnosed with a heart attack than men.”
–“Finally. An Official Scientific Statement on Heart Attacks in Women” (from the AHA in 2016: its first such statement in the 92-year history of the American Heart Association).