Women’s heart disease: an awareness campaign fail?

by Carolyn Thomas       @HeartSisters

I’ve been thinking a lot about awareness-raising lately because of a bombshell report(1) from the 2019 American Heart Association National Survey released this month.  Among other completely demoralizing findings, this report found that women’s awareness of their most common heart attack symptoms has significantly declined from a prior survey done 10 years earlier. How is that even possible?   .      .     . 

Reading the AHA survey report made my brain explode. I felt sick. I simply could not believe what I was reading in the latest issue of the cardiology journal, Circulation. Whatever we are doing to raise awareness about women’s heart disease – it’s not working.

It feels even worse when the bearer of such news is the very organization that brings us the massive Go Red For Women awareness campaign each February. As the AHA’s own website boasts:

“Now in more than 50 countries, Go Red For Women is a global phenomenon. From Go Red fashion shows, luncheons and campaigns, this campaign helps women improve their health and the health of their families.”

Or does it?

Here’s what this latest AHA National Survey report discovered:

  • Women were more likely in 2019 than a decade ago to mistakenly believe breast cancer is their leading cause of death. Younger women in particular were more inclined to say this.
  • Awareness of heart attack symptoms declined among all women. Only 52 per cent of women reported that chest pain was a symptom, and 38 per cent reported pain that spreads to shoulders, neck or arms was a symptom. Only 28 per cent reported shortness of breath was a symptom.
NOTE FROM CAROLYN:  It was at approximately this point in reading the original report when I had to go have a wee lie down just to recuperate from what I’d read so far. . .
  • Women with high blood pressure were 30 per cent less aware than women in general that cardiovascular disease is the leading cause of death among women.
  • Awareness of what to do if having heart attack symptoms was mixed. Knowledge that women need to call 9-1-1 was up from 47 per cent in 2009 to 54 per cent in 2019, but knowing they should take an aspirin was down from 23 per cent to 14 per cent over the 10-year period.
  • The greatest declines in overall awareness of heart disease were among Hispanic women with an 86 per cent decline, Black women with a 67 per cent decline and younger women 25-34 years of age with an 81 per cent decline.

So in the interests of accuracy, and to correct some misconceptions that appear to be more pervasive now than a decade ago, here are some FACTS about women and heart disease (as summed up in the Heart and Stroke Foundation’s comprehensive annual report entitled“Ms. Understood”): 

-Five times as many women die from heart disease as
breast cancer.
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-Heart disease is the leading cause of premature death for women.

-Early heart attack signs are missed in 78% of women.

-Every 20 minutes, a woman dies from heart disease here in Canada.

-Women who have a heart attack are 50 per cent more likely to die within the first year compared to our male counterparts.

-Two-thirds of heart disease clinical research focuses only on (white, middle-aged) male subjects.

That research, by the way, includes not just those (white, middle-aged) male subjects. Even in animal research (which must take place before human subjects are studied in clinical trials), only male laboratory animals have been used for decades.
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Ooops. . .     See what I just did there?

I instinctively reverted to rhyming off a list of FACTS for you.
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That’s basically what I’ve been doing ever since I graduated from the annual WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic (class of 2008!)
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Cardiologists like those who taught the class of 2008 during our training believed that facts like these are far more meaningful if shared by real live women who had actually survived a cardiac event themselves rather than by somebody with no lived experience. And that made sense to all of us.
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I have spent 12 years since that training assuming that when sharing more facts, more data, more important information (here, and in my book, and during my Heart-Smart Women presentations), I’d be raising awareness.
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But let’s look at why I believed that:
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When I first arrived at Mayo for my training in 2008, I was like a sponge. And I soaked up as much as I could. I wanted more facts, more data, more important information, hanging onto every word from every faculty member onstage (all of them female cardiologists), day after wonderful day.
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But I was a highly motivated learner. I had somehow survived a dramatically misdiagnosed “widow maker” heart attack. I was desperate to learn how that had happened, as much as I could, as fast as I could. Every one of my 45 classmates was similarly motivated. And as Dr. Sharonne Hayes (founder of the Mayo Women’s Heart Clinic and Director of the WomenHeart Science & Leadership training programs) likes to say, we all left Mayo that week “gunning for bear!”
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What she meant was that, like my other heart sisters, I couldn’t wait to return home to start telling as many women as possible every shiny new fact I’d just learned. The prestigious Mayo Clinic reputation opened many doors for me, including those opened by physicians and nurses who were among my first audiences.

But most people, unless they have become personally involved (as either a freshly-diagnosed heart patient or as the loved one of such a patient) are simply not motivated to learn about a medical condition that they don’t believe will ever affect them – any more than I was before my own heart attack.

Yet it appears that we’re still using the awareness-raising communication tools we’ve always used: more facts, more data, more information – and now look how that has turned out.

Right now, I have far more questions than answers about how we should respond to this report – all of us, from big organizations like the American Heart AssociationWomenHeart: The National Coalition for Women with Heart Disease,  The American College of Cardiology’s CardioSmart,  the Heart and Stroke Foundation  or academic-based women’s heart centres – to individual heart patients like our 900+ patient educators throughout the U.S. and Canada, all grads of the WomenHeart annual training since 2002.

But it seems evident that throwing more information at women stopped working at some point during the past decade.

Dr. Virginia Howard at the University of Alabama (one of the co-authors of this report) summed up her own dismay at what she called this “highly concerning trend”:

“Preventing heart disease remains our Number 1 priority — we should be as close as possible to 100 percent awareness.”

We should be, but here’s the warning from Ann Christiano and Annie Neimand at the University of Florida’s Center for Public Interest Communications. As they wrote in their report 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.”

It’s also basically what Amy Johnston, a PhD student and researcher at the University of Ottawa Heart Institute, also said  when she Tweeted her own response to this report:

I think all of this shows that we NEED to think outside the box. It’s like saying we can recruit more women into clinical trials by simply putting up more posters.

“Doing the same thing over and over again does not work.”

One concerned reader on Twitter wondered after seeing this report: have we ever thought about asking a celebrity who has been diagnosed with heart disease to help raise awareness?

My response: “We’ve not only thought of it, but every time we hear about another celebrity being diagnosed, we get excited by the fantastic news! Yet another great opportunity to raise  awareness!!”

Amy Johnston’s compelling image of putting up more and more posters, doing the same thing over and over again, is an apt metaphor: our messaging about women’s heart health has been  buried under growing piles of metaphorical posters out there.

Christiano and Neimand describe most awareness-raising campaigns as “wasting a lot of time and money for important causes that can’t afford to sacrifice either.”

I just don’t know. Perhaps the big organizations might want to shift some of their revenues next year usually reserved for raising awareness to consulting with the University of Florida’s Center for Public Interest Communications – to learn why public awareness campaigns so often fail to reach their stated objectives.

The two most discouraging questions I’m now asking myself:
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Have I just been wasting my time all these years?
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And does wearing red one day a year during a Heart Month luncheon actually help to increase awareness of this important cause?
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According to this survey report, the answers are YES and NO.
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Take care, and please stay safe. . .
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1. Cushman M, Shay CM, Howard VJ, Jiménez MC, Lewey J, McSweeney JC, Newby LK, Poudel R, Reynolds HR, Rexrode KM, Sims M, Mosca LJ; on behalf of the American Heart Association. 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.” Circulation. 2020;142:e000-e000.

Image: by Rafael Zajczewski at Pixabay

Q:  Why have women’s heart disease awareness levels fallen so badly in the past decade?

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NOTE FROM CAROLYN:   I wrote much more about facts, data  and information about women’s cardiovascular disease 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 their code HTWN to save 20% off the list price).

See also:

-the full statement from the American Heart Association called “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

Am I having a heart attack? (every possible cardiac symptom I could think of)

Is it enough to have “enough” women in cardiac studies?

Women fatally unaware of heart attack symptoms (by the way, I wrote this article back in 2009)

A professor’s take on women’s heart disease

Your health care decisions: don’t worry your pretty little head over them

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25 thoughts on “Women’s heart disease: an awareness campaign fail?

  1. I have never been a complainer, when something is wrong I tell my doctor. But I have found out that it falls on deaf ears – or are you depressed?

    From doctors that don’t seem to care or seem to think women just don’t count but for “0” as the military put at enlistment offices. I was diagnosed with final stage heart disease 22 Dec 2018 by my cardiologist 5 weeks after my husband died. This was the first time I was told I had heart disease. I see my doctors regularly. I was told l had COPD for years. In the end it was a misdiagnosis. And it doesn’t end there. There are many things I could tell but I could go on for awhile.

    Disappointed with women’s health care.

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  3. As we know, awareness of women’s heart attack symptoms, etc, can be lacking in the doctors as well.

    I learned just yesterday from my endo that any medication or supplement with biotin/vitamin B7 in it can interfere with troponin testing and thyroid testing, along with potentially many other blood tests, because of the use of biotin by the labs, sometimes right in the collection tube.

    My endo recommended stopping anything with biotin in it “for a few days” prior to any bloodwork being done. Makes me wonder how many women are turned away from the ER even with classic chest pain because their troponin tests aren’t accurate, as I suspect many more women than men take supplements that might have biotin in them. Explains more.

    Liked by 1 person

    1. Thanks for this important reminder, Holly!

      This FDA warning that biotin (a popular supplement often purchased for its hair/nails/skin benefit claims) can interfere with cardiac tests for troponin – a cardiac enzyme that that, when detectable in the blood – helps to diagnose heart attack – came out in 2017.

      How is it even possible that ALL physicians are not yet aware of this? I just did a quick search for side effects of biotin and very few resources carry the FDA warning!

      That recommendation to stop taking biotin supplements three days before cardiac tests is good advice – except for people in mid-heart attack who will be tested for troponins immediately in Emergency without stopping their biotin.

      In those urgent and unplanned cases, it’s particularly important to immediately inform Emerg staff of all supplements being consumed.

      Maybe we need yet another awareness campaign just for healthcare professionals about biotin – since the FDA warnings don’t seem to be adequately followed yet?

      Take care, stay safe… ♥

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  4. I too feel like my Heart Sister, DeArra Foster.

    I attended the WomenHeart Science and Leadership Symposium at Mayo Clinic in 2009. I have advocated on behalf of women living with Heart Disease for 11 years on the local, state, and federal levels. I appeared on The Dr.Oz Show twice, The Oprah Winfrey Show, local television, and attended 2 meetings at The White House on Cardiovascular Disease. I advocated on Capitol Hill several times for the ACA and was thrilled when it passed.

    Now I feel like I am preaching to an empty room and hoping that someone hears me.

    Heart Disease is the #1 cause of death for Americans. If the ACA is struck down by SCOTUS, I feel like the past 11 years of my advocacy has been in vain.

    All the talks, interviews, health fairs, and appearances would have been for not. As a woman living with Heart Disease and terrified that my Healthcare coverage could be taken away, this Champion has lost her zest.

    Liked by 1 person

    1. Dina, I too felt completely and utterly demoralized by this report.

      My whole focus (indeed, the whole focus of all of our Mayo training!) had been on “educating” other women once we returned home from Rochester. We soaked up all the facts, data and information we learned from phenomenal world experts on women’s heart disease – ready to spew it back out whenever and wherever we were invited to speak. We were THRILLED to be invited, in fact, because we knew that what we were doing was really important.

      I don’t doubt that, one-on-one, we DID reach individual women and made a difference in their decision to call 911, for example (lots of women have told me this after the fact, so I cannot assume it was “all for not”), but neither one of us can continue to try to “fix” everything this survey report discovered, one person at a time.

      As you know, I live in Canada, but I’m particularly worried about women in the U.S. like you who are now at risk of losing what healthcare coverage they may have, ESPECIALLY if they, like you, have a pre-existing heart condition. This is a very real likelihood – depending of course on the results of your election.

      My only (small) consolation amid this utter despair is what you mentioned to me on Twitter earlier today. It made me realize that addressing this discouraging lack of awareness isn’t just up to you or to me or to individual women in general, but that the medical profession MUST step up to the plate (specifically re your comment that “women of color are less likely to receive testing or treatment for heart disease”).

      That shameful reality is NOT up to us to fix!!!!! That’s front and centre the responsibility of the medical profession to address, starting yesterday.

      Thanks so much for weighing in here with your perspective, D. I sure wish we lived closer (and not in pandemic times) so we could commiserate in person over a cardio-protective glass of wine and a hug….

      Take care, stay very safe, my heart sister… ♥

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  5. I was in the first class, 2002, of the Science and Leadership Symposium sponsored by the Mayo Clinic and WomenHeart. I have advocated on both the local and federal levels for women’s heart health, and facilitated a support group for women since 2004.

    Why am I not surprised by this report? I feel like I have been butting my head against a wall for all these years. The right words/responses I have heard for all these years, but I have seen little change.

    I have often felt like I was given a pat on the head, and then business as usual. How sad for all of us.

    My heart event was 19 years ago, I am on two sites for Women with Heart Disease. I read everyday about women being turned away with so many questions by their Doctors. I read/see everyday women with several symptoms asking if they should go to the ER.

    I often feel that women may be their own worst enemy along with the medical professionals. Very frustrating for those of us who keep preaching those signs and symptoms.
    DeArra Foster

    Liked by 1 person

    1. What an honour to see your name in my inbox, DeArra. I don’t think we have met in person over the years, but just yesterday I was looking at your picture in a WomenHeart newsletter article, letting us know about the sad death of Sylvia Rackow.

      Despite the honour of hearing from you, I now feel even more distressed about these AHA survey results! If you, a pioneer women’s heart health activist for 18 years, are as frustrated as I am, where can we possibly go from here?

      To me, this seems to confirm that we simply cannot keep doing what we’ve always done just because that’s what we’ve always done – when doing so is clearly not reaching women we want to reach. Isn’t that the definition of insanity?

      I do not know the answer here – but I am looking forward to an official response from WomenHeart and every other organization whose work involved raising awareness of our cause. I do have a deep gut feeling that what we’ve been doing is just not working. It’s not a matter of, as Amy Johnston says in this post, “putting up more posters”.

      I know what you mean about “women may be their own worst enemy” – asking if they should go to Emergency. Even when we know the symptoms are cardiac, this ‘treatment-seeking delay’ behaviour seems rampant among women, as I wrote about back in 2009.

      A woman on Twitter yesterday, for example, told me that during her heart attack, she was trying to decide if she should go to her AquaFit class – or call 911?!?!

      It’s tempting to blame women for not paying attention to our messages, but I suspect they are simply the receivers of a message that is clearly missing its mark – as the University of Florida authors keep telling us. They may be on to something…

      All I know is that I do NOT want to be doing this for another 10 years only to hear the same disturbing analysis from the next 10 year AHA update.

      Thanks again so much for sharing your perspective, DeArra… Take care and stay safe… ♥

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  6. Good morning Carolyn. Having just read every word of your blog today, as I do most Sundays, I initially want to tell you that your answer to the first question at the end is YES not NO. You have, without question, NOT been wasting your time. Your blogs are always relevant and real… timely and informative. Please, please don’t stop. We women DO read your words and learn from them.

    I was shockingly diagnosed with heart disease and a blocked artery in October 2016, three months after moving to Victoria. Timing and access to an excellent cardiologist/interventionalist was a surpreme and timely surprise…two stents placed January 4/17, luckily before I had a heart attack. Per protocol, I was immediately placed on plavix and aspirin, which started a roller coaster ride of upper GI bleeding and blood pressure spikes, landing me in hospital in critical condition, twice treated with blood transfusions and iron infusions.

    Finally taken off, one at a time, the culprit meds only to have stents block both, then angioplasty to clear them… scary. Back on meds… more bleeding and more infusions and transfusions. Severe anemia and very low hemoglobin are my enemies to this day… never an issue prior. This is the shortened version but demonstrates how many other things can happen… who knew? Not me.

    So…what to do going forward to get the attention of women?

    Most don’t have time nor inclination to read. Using social media and television video campaigns that demonstrate the real thing (I had an in-shape friend collapse while curling 1-1/2 years ago at age 60. She refused an ambulance, was driven to ER but died because it was too late…she would likely have survived if she allowed an ambulance.) and personal stories in person at special events in schools (start young to reinforce the severity), in the community, provincially and federally.

    Women feel and are hit hard by emotion. Use it…NOT numbers and facts and trends. Hit them in their hearts. Show the real stories and the results of NOT paying attention to warning signs…SHOW what the signs are…ALL of them. I had jaw ache and a heavy feeling mid sternum, which certainly did not mean heart issues to me. I am so lucky.

    There you have it… my thoughts and suggestions going forward to hit women where it hurts most…in the heart.

    And, above all…please do not ever stop doing what you do because you write with such heart…your words mean something and definitely count and connect.

    Good health to you, Carolyn. Stay calm and keep doing what you do.

    Jackie Roberts

    Liked by 1 person

    1. Hello Jackie and thank you for your kind words (although I’m not sure if I’ll always be able to forever follow your instructions (twice!): ‘do not ever stop doing what you’re doing!’) 😉

      I’m so sorry to hear of your awful response to the anti-platelet drugs (Plavix and aspirin). It’s a terrible dilemma for certain stent patients, that very fine line between serious bleeding risk vs. the risk of a deadly blockage forming inside the new stent. I’m also sorry about the death of your friend – a tragic cautionary tale about the need to call 911.

      Here’s my concern, as I touched on briefly in today’s post: your healthy in-shape 60-year old friend would likely have been considered low-risk for heart disease (she probably considered herself low-risk, too – that is if she ever even thought about heart disease).

      So if she had ever seen TV or social media video campaign warnings in advance telling some version of her own story, I’m guessing that she may have felt much the same as I did, pre-heart attack – ‘Too bad about this poor woman, but that story does not apply to me because I’m NOT at risk, and that’s never going to happen to ME!”

      I’m so glad you mentioned non-traditional cardiac symptoms (e.g. your jaw pain and “heavy” chest feeling). Lack of awareness of common cardiac symptoms was the most horrifying result I saw in the AHA survey report: “Only 52 per cent of women were aware that chest pain was a symptom”.

      I almost fell off my chair when I read that! If half of women surveyed cannot identify CHEST PAIN as a cardiac symptom (the most commonly experienced heart attack sign in both women and men), what hope do they have for recognizing their own jaw pain or “heaviness” in the chest as common symptoms in women? It’s very distressing to even contemplate this reality…

      Wishing you good health as well, Jackie. Take care and stay safe! ♥

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  7. I had to laugh, yes laugh albeit sadly, at your shock at your widow maker and all your resultant emotions. For I too, survived a widow maker in 2014. Six years later, women’s Heart Disease continues to be ignored (ignored not too strong a word).

    I also was and still am horrified with this persistent attitude. I have come to the terrible conclusion Heart Disease is not well funded, meaning the medical profession is not going to make any money off a female patient with the disease. Cancer is the cash cow.

    I apologize if my bitterness offends anyone but I have experienced so much disregard from doctors I have given up hope. My Widow Maker is the first thing I mention to every physician every visit and the last, if ever, issue to be addressed. At best they throw some BP meds, statins, baby aspirin etc. at me and discussion ended.

    Maybe not in our generation, Carolyn, will awareness rise in importance, but perhaps in our children’s (or children’s children) time. You know, I watch the Go Red For Women fashion show every year and even to my untrained eyes the show is sloppily mismanaged, clumsily put together, amateurishly produced (in spite of the best efforts of Paris and Nicky Hilton’s glamorous runway strut – you go ladies!)

    Liked by 1 person

    1. Thanks very much Karen for your comment. It’s important to keep in mind that your observations about heart disease may not apply to male heart patients in the same way they did to you and to me.

      I’m wondering, for example, if it was being a heart patient that made you experience “disregard” from your doctors, or was it that fact that you’re a female heart patient?!

      As one of my ‘Heart-Smart Women’ presentation audience members once told me about a conversation she’d overheard in Emergency between the Emergency doctor and the (male!) patient in the bed next to her beyond the curtain:

      “All of your diagnostic tests came back ‘normal’ but we’re going to admit you for observation just to make sure that it isn’t your heart!”

      That’s very appropriate care in any hospital – his symptoms were NOT being ignored. So this man is taken seriously despite ‘normal’ diagnostics and admitted for observation as current treatment guidelines suggest, but I and countless other women are misdiagnosed and sent home?!

      I suspect that being ignored is far more likely the result of whether the patient is a male or female…

      Take care, stay safe… ♥

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  8. I wholeheartedly agree with the comments above….but I think there may be something else going on.

    In the past few years “facts” have become politicized and the very concepts of truth and truthfulness are regularly violated in public forums. I wonder if people see a list of facts and wonder who is behind those “facts” – and question their agenda. The progression of COVID-19 is a testament to the shaky status of factual medical information.

    Combine that with the vagueness of symptoms and difficulty of diagnosis with many cardiac conditions that affect women and it isn’t surprising that we are in this situation.

    I don’t know the answers but I wonder if utilizing a different format or approach might work better….many people now read very little – they listen to or watch clips….put the information into a different format? Videos? Radio clips? Show a picture of 100 coffins and color code them by cause of death instead of expressing in words?

    Many patients and some doctors have a tendency to latch on to the first convenient explanation of symptoms… whether it is the right one or not; maybe all of us need to adopt a pattern of problem solving that addresses this tendency….

    I don’t know but I think there are a variety of societal and cultural factors that have led to this.

    Liked by 1 person

    1. Hi Helen – I couldn’t agree more with your observation “a variety of societal and cultural factors have led to this…” It’s what researchers (and physicians, if you’re very lucky to have one who practices with this in mind) call Social Determinants of Health, a fascinating field of social science.

      So in medicine, how a patient will be affected by a diagnosis, treatment or outcome doesn’t depend ONLY on how serious the diagnosis is, but on other important things like race, gender, income, education, employment, early childhood influences, housing etc. That’s why it’s so troubling to read in this AHA survey report that the biggest decline observed in overall awareness of heart disease were among Hispanic women (86 per cent decline!!!!) and Black women (67 per cent decline!!!!)

      Such discrepancies go much deeper than the need to for more information to the general public.

      Good point about the bizarre politicization of facts, by the way! The anti-science conspiracy movement is a good example (like the preposterous claim I heard recently that mask-wearing is just some government plot funded by “Big Mask” people (who Big Mask is they didn’t specify – maybe the young Mum near my town from whome I buy my cotton masks via her Etsy account…?)

      Take care, stay safe… ♥

      Liked by 1 person

  9. Hello Carolyn…
    As a health educator for many years and a lover of facts and data like yourself…This IS Shocking.
    And I think you are right that this has less to do with Heart Disease and more to do with the Human condition and learning theory. Here are a few thoughts I had after trying to wrap my head around the issue:

    1) We are bombarded with media and print advertising all day long….A consumer scans the media and chooses what to actually pay attention to…. if you don’t have heart disease in your life in some way shape or form the heart disease info is probably deemed as not relevant.

    2) Where is the bulk of humanity in regards to meeting their basic needs? According to Maslow’s hierarchy of Needs; basic survival needs need to be met In order for humans to consider higher level needs, Food, Air, Water, Personal Safety. Isn’t HTN and heart disease more prevalent in the poor?

    3) Is BLAST education felt As relevant to the individual? This is a problem even in primary schools… the lumping together of students needs, talents, interests, learning styles into one homogenous curriculum. Results in many “problem students” Perhaps doing survey evaluations of smaller groups of women of various ages and ethnicities might point toward different educational goals for different smaller, target groups. Women Aged 18-29 may have different educational needs than Women aged 50-60.

    4) You mentioned metaphysical posters and I chuckled. The truth is there is a shift in focus these days in many areas of Life emphasizing Quality over Quantity. What is the meaning of my life here and now? rather than, How long can I keep myself alive and prevent physical death?

    5) Women are notoriously deficient in the Category of “Self Care” …throwing themselves under the bus to “save” their children, “Save” their marriage, “save” the whales. So education in Self care, putting the oxygen mask on yourself…. needs to take place In order for women to even feel worthy of learning about heart disease and preventative care.

    People have to see, know and FEEL the relevance of a subject to be invested in learning new material. Addressing the “ fires” burning in any one person’s life is essential before they can assimilate new information.
    Human motivation is a complex thing. Why when we know something is good for us do we still choose not to do it? Like Diet and Exercise. A conundrum for sure.

    I find the work that you do interesting and fascinating and I pay attention… but I have CAD and HCM and it is very relevant to me personally.

    Thank You for all you do!

    Liked by 1 person

    1. Hello Jill and thanks for such a well-thought-out summary of some of the key issues at play here. And you even numbered them!

      YES, we are bombarded with information, now more than ever, nonstop, 24/7, whether we want it or not. I’ve often compared my own utter lack of interest in heart disease (prior to my own heart attack, of course) as being just as non-existent as my interest would have been in learning about lupus or brain tumours or anything else that had nothing to do with my life or my family.

      That’s why I hope the AHA report isn’t going to elicit a kneejerk “More information!!” response from both patient advocates and big organizations.

      Speaking of big organizations, this morning I received a note from a breast cancer oncologist who follows me on social media after I told her that I felt so demoralized while reading the AHA report that for a moment, I wondered (perhaps even naively HOPED?) that these alarmingly inexplicable survey results might have meant there had been some sort of methodology flaw in the survey itself. To my surprise, she replied:

      “I thought that too. Just as when I read ‘American Association for Cancer Research’ or ‘American Society of Clinical Oncology’ surveys, I wonder the same. These surveys – especially if publicized – often serve an organization’s agenda, ‘demonstrating’ a funding need.”

      That’s when my head exploded again! I can’t speak of course for the American Heart Association or any cancer organizations, but when cancer specialists start theorizing that their professional societies may publicize negativev surveys in order to “demonstrate a funding need”, that makes me really sick.

      In your #2 comment re poor people: I mentioned Social Determinants of Health in my response to Helen (above) and this is what leaped out at me in the report’s assessment of the “biggest decline observed in overall awareness of heart disease were among Hispanic women (86 per cent decline!!!!) and Black women (67 per cent decline!!!!)”

      That’s a big clue, in my opinion, on where awareness efforts are needed, and also who the messengers for those target audiences should be. It reminded me of the famous L.A. Black Barbershop blood pressure project, in which trained pharmacists went into a number of selected barbershops in black neighbourhoods to monitor BP numbers (i.e. right where the people they wanted to study were hanging out). They didn’t just put up posters about blood pressure – this was instead a focused in-person outreach about community and trust. Maybe we should take a page from the Black Barbershop Project…?

      Finally, your last statement confirms what I’ve been saying too: most heart patients (and family members!) are far more interested in the subject of heart disease than people who just don’t see the relevance of this diagnosis to their own lives. We are trying to figure out how preaching to the choir might work when we’re a mile away from the choir…

      Take care, stay safe… ♥♥

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      1. What stood out the most to me in your reply was the “Babershop HTN” story.

        Small, targeted groups… Hands on palpable learning… Not sure how to pull that off???

        Role playing? Start with high school health class … giving the didactic information then having them act out various scenarios of heart attack symptoms?
        Blessings
        Jill

        Liked by 1 person

        1. Yes, that Black Barbershop Project stood out for me, too – and the results of the study were remarkable. Here’s the link to that story:

          In the study, barbershop clients received either pamphlets about lowering their blood pressure, or they also met with a local pharmacist for an in-person chat while they were in the shop. “Two-thirds of the men who saw pharmacists lowered their blood pressure to under 130/80 (the target threshold for high blood pressure) vs 12 per cent of the men who just got advice.”

          Yet another example of how just offering information is ineffective compared to engagement, community and trust.

          This project has expanded since it was launched in L.A. in 2018. It seems like a promising concept for black and minority communities that could expand to women’s awareness of heart disease (through their church groups, hairdressers, anywhere that women ‘hang out’ together) – focusing more on community and trust than just putting up an “awareness” poster.

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          1. Just to piggyback on this…

            At the turn of the last century, when barbers had to apprentice to become one, they also used to work as an adjunct to doctors to perform certain skin-related procedures for patients that they were trained in, so it would seem this idea is not new.

            Maslow had it right. People need certain things to not just survive, but to thrive. I think when we throw information at populations that are too busy trying to fill those needs on the “survival” levels, which seems to be more relevant to people of color, they are more likely to brush aside the other things and relegate them to “I’ll get to that later”. They have no idea how to find help or somehow do more than survive.

            Perhaps, as the economy has shifted, these populations have struggled more and have now fallen down to a lower portion of Maslow’s Hierarchy and they just reached their saturation point.

            Think how it is with COVID, and moms are currently struggling with work, kids at home with distance learning, Zoom Calls, quarantine etc. Now, if you’re a POC family living in a small apartment doing that, how much time do you have for health information or self care?

            Time to recruit healthcare professionals to volunteer in their places of worship. Build those relationships. Hair shops etc. Fishermen go where the fish are and use the right kind of bait!

            Deanna Colson

            Liked by 1 person

  10. First, I want to piggyback on Sandra’s response. “The gauntlet of doubt” is a real thing. I personally have been hospitalized three times in the last six weeks, each time with a different set of heart symptoms. I’ve also been discharged each time with a different “diagnosis” that are mostly vague theories about why the events happened.

    I still have symptoms, but I’m soooo discouraged about the idea of even going back in to face it all again, just to get the shoulder shrugging response. (Don’t worry, I’ll be facing off with the cardiologist tomorrow!)

    Second, I want to share my immediate response to these findings. The campaigns need to be focusing on women’s stories and experiences before disseminating all the facts (if even worrying about the facts at all). Can’t cite them right now, but there are plenty of studies that show we learn best when we have an emotional connection to information.

    In other words, what attracted me to your blog in the first place was reading your story, the video of the mom having her heart attack, stories of experiences with doctors.

    My “gunning for bear” moments are in my desire to read about other women’s stories about what has happened when they had their heart attack/disease moments, the ER visits, dismissive physicians, misdiagnosis, or how they have found the best doctor in the world.

    These are what make me feel less alone, and those are what opens my mind to keep reading and absorb just a few of the data/facts that get slipped in there.

    Liked by 1 person

    1. Thanks for taking the time to share your perspective here. So many good points – I agree with the importance of choosing messaging that makes an emotional connection with the recipient. Stories are one way of making that connection. I was interested in the work from Ann Christiano and Annie Neimand (mentioned above) on specific and predictable themes that emerge in storytelling, some themes more effective than others in meeting the goals of telling that story.

      In another academic paper they called “The Science of What Makes People Care“, they wrote: “People are really good at avoiding information for three reasons: It makes them feel bad; it obligates them to do something they do not want to do; or it threatens their identity, values, and worldview.”

      Maybe that’s part of the reason that women know so little about heart disease, our biggest health threat (UNLESS they, like you, are personally affected by a very specific condition, in which case they can become “sponges” like I have become!) This report doesn’t really focus on women who have already been diagnosed or are seeking a cardiac diagnosis – but more on those in the general population who, according to this survey report, seem to have alarmingly little interest at all in learning about heart disease. Those are the ones who remain a mystery to me.

      Take care, stay safe… ♥

      Like

  11. Compared to heart disease in women, cancer is easy to detect. Heart disease is subtle. Too often, its symptoms are dismissed or attributed to Something Else.

    Most PCPs will test a woman for diseases other than heart long before they send her to a cardiologist. Testing for heart disease is rarely at the top of the yearly physical exam’s To Do list.

    Further, too often, long before she gets a diagnosis of heart disease, a woman has become deeply embarrassed by the Nothing’s Wrong findings of all these tests and thus is silenced.

    You yourself have pinpointed the gauntlet of doubt you had to go through before you finally got a correct diagnosis. So did I.

    We both had to fight the dismissiveness to prove that there was a real problem. And many of us with Coronary Microvascular Dysfunction are still pooh-poohed and dismissed as fussing over nothing.

    After a women gets sent away once, let alone several times, thoroughly embarrassed and feeling guilty for having complained about the Nothing pain she’s experienced, she gives up. And she passes the story on to her friends. And she dies.

    So place at least some of the lack-of-awareness blame on the dismissiveness of the PCPs and the Emergency Docs who tell women there’s nothing wrong or it’s acid reflux or it’s stress nerves or … whatever.

    Get the PCPs to put a thorough check for heart disease at the very top of the yearly physical’s checklist and you’ll see awareness increase rapidly.

    Liked by 1 person

    1. Hello Sandra and thanks for weighing in here.

      I too would love to see family doctors do routine updates on their patients’ cardiac risk factors as part of patient education (I always urge physicians in my audiences not to abdicate their traditional role as our educators!) And certainly every OB-GYN should be telling patients with pregnancy complications (preecamplsia, gestational diabetes, full term/low birth weight babies, miscarriages, etc etc) that they are now at 2-3 times higher risk for heart disease – and should be carefully monitored from now on.

      I was stunned by so many of this report’s findings – e.g. that women already diagnosed with high blood pressure apparently know less about their cardiac risk factors than women who DON’T have high blood pressure! I can hardly even comprehend that statement. Is there no opportunity during the doctor-patient discussion that starts with “your blood pressure is too high – here’s the prescription for the meds you need to take” about WHY it’s important to lower that blood pressure, what might happen if you DON’T get it under control, etc?!?!

      Although many of the breast cancer patients who follow my blog might disagree that their cancer was “easy to detect”, we know that women in their 50s and younger are seven times more likely to be misdiagnosed and sent home from Emergency compared to males presenting with the same symptoms – I wonder how that stat compares with cancer patients who are sent home, misdiagnosed?

      Take care, stay safe… ♥

      Like

      1. Ha! Cancer is right up there on the yearly physical checklist, and its possibility can be confirmed by a simple lab test. It takes a very savvy PCP to spot heart disease and an equally savvy cardiologist to confirm it, because too often, EKGs and stress tests and so on fail to identify it.

        In all my (now many) years I have never heard of a woman having to battle the dismissiveness and disbelieving that you and I and probably thousands of other women have had to endure.

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