When a red dress just isn’t enough to raise awareness

by Carolyn Thomas       @HeartSisters

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 calledthe 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 20% off the list price).

* Full disclosure:  cardiologist Dr. Roger Blumenthal wrote a lovely review of my book when it was published.

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Q:  Do you agree with the AHA commentary that we’ve had a ‘decade of lost ground’ in women’s awareness?

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See also:

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).

14 thoughts on “When a red dress just isn’t enough to raise awareness

  1. Hi Carolyn,

    Gosh, it is alarming. And disappointing. Plus, the fact that women’s awareness has actually declined – well, that is even more surprising and concerning, too.

    My first reaction upon reading this was that Breast Cancer Awareness Month hoopla that’s been going on for decades now has perhaps contributed in some way to this decline. I actually wrote a piece a while back titled, Has the Pink Ribbon Become the Bully of Ribbons?” Granted, it’s about cancer ribbons and the almighty pink one that overshadows all the others, but… well, I think you get my point.

    Perhaps you’re right, medical schools and the doctors who come out of them must do better if things are to improve. I mean, the buck kinda stops with the medical professionals, doesn’t it? Information overload might be a problem, or rather, is not the entire solution, because obviously, there’s still a high need for accurate information about heart disease risk that women need to hear. As usual, there are no easy answers.

    Don’t get too discouraged, my friend. Know this – your work continues to make a difference. Thank you for this important read.

    Liked by 1 person

    1. Thank you Nancy for taking the time to weigh in here today! You’re so right – the results of that AHA survey are alarming, disappointing, surprising and concerning – all of the above!!

      It’s the decline in awareness compared to the last survey done 10 years earlier that completely knocked me flat. How is that even possible?

      If you have time, read the “Stop Raising Awareness Already” article by the University of Florida researchers I mentioned – I’d be interested in your take on this.

      In their work at the Center for Public Interest Communications, they cite examples of how awareness-raising campaigns can sometimes backfire (the Pink Ribbon campaign, for example, went from raising awareness (and honestly, does anybody still believe that we need to raise “awareness” of breast cancer?) – to being criticized for ignoring women living with metastatic breast cancer, or for trying to turn a very serious and frightening medical crisis into some kind of a fun celebration of a welcomed diagnosis that is actually a GIFT that makes life BETTER (and I know that is a pet peeve of yours!)

      When I first started reading about the Pink Ribbon, it was the heady PINK days of PINK-handled Smith & Wesson handguns and PINK labels on Campbell’s soup cans. I’d recommend anybody considering a donation to help support Breast Cancer Month should first check out the non-profit called Breast Cancer Action and their “Think Before You Pink” advocacy message.

      Many thanks again, Nancy – take care, and stay safe… ♥

      Liked by 1 person

  2. Carolyn,

    I just read an article in The New Yorker…that may play into the problem of educating folks about women and heart disease.

    The studies clearly showed how difficult it is to change people’s minds about preconceived ideas or opinions, even if they don’t have all the facts.

    Unfortunately, the studies did not have a clear answer to how to overcome this type of bias.

    Thank you for being our advocate and trying to educate those around us all.

    Mary

    Liked by 1 person

    1. Hi Mary and thanks so much for sharing that link to the New Yorker article. So interesting… In a world where “alternative facts” are being offered up with a straight face as being just as valid as actual facts, we can’t assume that information will be either accepted or believed. Then there are the whole anti-authority, anti-science conspiracy theorists for whom no amount of factual information will work.

      As the Florida researchers quoted in this post explained, if giving out lots of credible information was all it took to successfully raise awareness, all parents would be vaccinating their children.

      It’s hard to come up with another possible solution to problems caused by a lack of information without wanting to just repeat MORE information – which researchers are telling us doesn’t work anyway! So frustrating…

      Take care, stay safe… ♥

      Like

  3. I want to reinforce the notion that your blog is valuable, Carolyn! In addition, I wonder if part of the problem is the tests that currently exist to diagnose heart blockages in women.

    In my own case, I experienced an episode of chest pain 10 years prior to my heart attack. My family doctor sent me for a stress test. The doctor administering the test stopped it early on, sure I had unstable angina. I was kept in the hospital until I had an angiogram the next day. That doctor said my arteries were clear so maybe I had acid reflux. I was discharged, tested and treated for acid reflux, and life went on.

    About 5 years later my family doctor sent me ( much to my chagrin) for another stress test and lo and behold – same thing happened! Test was stopped, didn’t look good and I was sent for a nuclear treadmill. I passed that one, too.

    Life went on until 5 years later I had a heart attack. The cardiologist who I saw in my Cardiac Rehab program told me that both the early angiogram and later the nuclear treadmill had MISSED the blockages that were surely there 10 and 5 years earlier because heart disease develops over a long period of time. I wonder if other tests, not sure what, had been done 10 and 5 years before my heart attack, my heart disease would have been discovered. The angiogram and nuclear treadmill do NOT pick up every case, maybe less so in women, I don’t know.

    Maybe new or different tests should be done/developed for women. We all have routine mammograms, PAPs, etc. but no regular, routine, effective screening for heart disease, the NUMBER ONE killer of women!

    Liked by 1 person

    1. Hello Christine and thanks for your kind words – much appreciated!

      In your case, you were actually a heart patient for a long time before you were finally appropriately diagnosed. It’s absolutely not surprising, really, given that almost all cardiac research (on diagnostic tests, drugs, procedures, outcomes) until very recently has been done either exclusively on (white, middle-aged) men, or with women included in statistically insignificant numbers. So no wonder!

      Researcher Dr. Karin Humphries from Vancouver has done some interesting studies on the cardiac enzyme called troponin; if troponin is detected during a blood test, it’s typically considered a sign of heart muscle damage due to a heart attack.

      BUT Dr. H has found that because women produce lower levels of this biomarker than men do, the cut-point (the number above which is a danger sign) should be adjusted, she says, to reflect the lower levels found in women during a heart attack. Any woman who has been told in mid-heart attack, as I was, “Your cardiac enzyme blood tests are NORMAL!” may not be given an accurate diagnosis. So YES, I do think you’re right: women need and deserve diagnostics that have been clearly developed for women…

      The slow onset heart attack is easy to miss – because it isn’t that Hollywood Heart Attack that we’ve all grown up seeing in movies and in the media (old guy clutching his chest in agony and falling down unconscious). For many of us, we can walk, talk, think, go to work, drive – all while in mid-heart attack!

      Take care, and stay safe… ♥

      Like

  4. I have no verifiable scientific evidence apart from what you quoted in today’s blog, but I am not surprised by the conclusion that doctors themselves should be targeted and better educated about heart disease in women.

    My GP, a woman herself for example, dismissed the strong family history (both sides) of heart disease I repeated to her on our first meeting, and although she was conscientious about high blood pressure control in my case, unfortunately dismissed a complaint by me about chest pain as simply acid reflux two days before I suffered cardiac arrest and a serious heart attack.

    Needless to say, she was embarrassed and has counselled me wisely ever since to call an ambulance immediately, if I ever experience symptoms again. The other problem, of course, is that standard blood tests, etc. do not – indeed, cannot – predict a heart attack. My blood pressure was under control with medication at the time of the attack, and my cholesterol levels were also excellent, part of the reason why she misdiagnosed acid reflux, I think, instead of a slow onset heart attack.

    In any case, I forgave her and am now under not only her care but also a cardiologist, whose definition of high cholesterol is much stricter than hers – hindsight, I guess, is always 20/20.

    Judy Kendle

    Liked by 1 person

    1. Hi Judy – you bring up an important point about diagnostic tools not being able to predict a heart attack: in fact, it’s entirely possible to pass all standard cardiac tests this week but then have a massive heart attack next week – based on the nature of obstructive coronary artery disease and the way the plaque rupture that causes blockages (and even heart attacks) takes place inside those arteries.

      And we also know that women have cardiac risk factors that have not been fully recognized by the medical profession until recently. Most modern cardiac risk calculators used by our healthcare professionals, for example, don’t ask about pregnancy complications, polycystic ovary issues, the known after-effects of breast cancer treatments, early menopause, inflammatory conditions like rheumatoid arthritis, or other documented cardiac risk factors that can affect women. Until we start seeing risk calculators that are actually designed to assess risks in women as well as men, how can we accurately predict?

      Take care, stay safe… ♥

      Like

  5. I’m glad to see the emphasis on the medical professionals.

    I’ve certainly had my share of lousy experiences, enough so I am quite resistant to go to the ER when I have an episode of chest pain. This is made worse by COVID since I want to avoid exposure, but the root of my resistance is the fear I’ll get yet another doctor who says all is fine and goodbye.

    While I do understand that information rarely changes awareness, I’m not sure what does. Certainly time to try innovation rather than repeating the same public awareness campaigns of the past.

    Liked by 1 person

    1. I agree, Sara – I think it’s far easier to just pile on more and more information than to come up with an alternative that’s both innovative AND effective.

      One such alternative that I’ve heard about is called the Los Angeles Black Barbershop Project – which was established to help reduce the health dangers of high blood pressure that African American men tend to have (far more than white men). A team of local pharmacists were recruited to visit 60+ barbershops to monitor blood pressure and meet with clients while they were visiting their favourite barber. A control group had their blood pressure measured, but did not meet with a pharmacist. At the end of the study, men who had met and talked to the pharmacist every 2-3 weeks lowered their blood pressure significantly compared to the control group and that positive effect lasted for the follow-up period afterwards. The researchers explained that this project was based on two things that are often missing in most medical trials: community and trust. Barbers (whom the men knew and trusted) helped to sign up participants for the study, and barbershops were also considered an important community gathering place for men, not only for haircuts but to play cards, watch the game, talk politics and socialize with their friends and neighbours.

      Perhaps we need some variation of the Black Barbershop Project to reach out to women where they are – especially to women in that 25-34 age group that scored so poorly in awareness surveys? Yes, the medical profession needs to pitch in to maintain their traditional role as our health educators, but that’s just the start…

      Take care, stay safe… ♥

      Like

  6. Oh Carolyn…
    Regardless of research projects, please know how much your blog is appreciated!… Other than that, I don’t know what to say…

    This must be just a “tad” disappointing having spent so much time and energy in the effort to help women come to terms with heart disease.

    Somehow I feel the answer is a VERY long term approach. Which of course, “Instant gratification America“ does not buy into easily.

    We did not become a nation of heart disease, diabetes and obesity overnight. Fighting and ameliorating the disease itself is only one aspect.

    Somehow, we need to become a society of wellness, not just disease prevention.

    It is a chicken an egg situation. Children need to grow up learning the principles that the body is a sacred space for your soul and our goal on earth is to keep it healthy, not satisfy our tastebuds.

    Yet, the parents need to understand this to support their children.

    How about a longterm study on children that are exposed to a heart healthy curriculum throughout their school years? Is there a reduction in heart disease as adults?

    Should there be a test on how to properly care for your body as well as the test on the US Constitution?

    As far as the doctors in denial, it is difficult but again early education in med school may be helpful.

    Liked by 1 person

    1. Hello Jill – the AHA survey results were indeed a tad disappointing (actually, much more than a “tad”, personally!) and I can only imagine how large agencies (the AHA, Heart and Stroke Foundation, the National Heart Lung and Blood Institute, and other heart-focused organizations that are in the business of raising awareness are now going to react to the survey results moving forward.

      My concern, especially after learning what social scientists know i.e. “people who are simply given more information are unlikely to change their beliefs or behaviour”, is that these large donor-driven agencies will resort to doing what they’ve always done when they identify a knowledge gap: provide MORE information.

      If – as the survey found – only 52% of women can identify CHEST PAIN as a cardiac symptom (!?), even my own urge is to start hollering “Chest pain is the most common symptom of a heart attack in both men and women, for Pete’s sake!”

      I agree – med school may indeed be our best bet at this point, given these disturbing awareness survey results…

      Take care, stay safe… ♥

      Like

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