The sad reality of women’s heart disease hits home

by Carolyn Thomas   ♥  @HeartSisters

I’m nicely settled back home now after a few days across the pond in beautiful Vancouver, where I was covering the 64th Annual Canadian Cardiovascular Congress there for Heart Sisters readers.

My favourite things about this trip: the weather, walking the Vancouver sea wall, the mountains, the divine heart-smart food, the fabulously helpful Heart and Stroke Foundation staff at the Media Centre, and the fact that I somehow managed to p-a-c-e myself most days while trying to take care of my heart.

My least favourite thing: out of over 700 scientific papers presented at this conference, I could count on one hand those that focused even remotely on women’s heart disease. My question is: why?

The people I did interview during the conference who are actually working in this area merely confirmed the discouraging reality of women’s well-documented lived experience with gender differences in heart disease risk factors, diagnoses, treatments and prognoses.  One, for example, suggested higher cardiovascular disease risk factors for female hospital staff who work shifts.  Another reported that women heart attack survivors under the age of 55 fared far worse than their male counterparts.

So by the time I sat down with Dr. Bruce McManus, I was grimly expecting more of the same. But Dr. McManus, who is the co-director of the Institute for Heart & Lung Health and a professor at the University of British Columbia in Vancouver, did share some local news about women’s heart health research: a recent joint announcement about the UBC Heart and Stroke Foundation Professorship in Women’s Cardiovascular Health. It’s one of the first of its kind in Canada, and it’s held by Vancouver research scientist Dr. Karin Humphries.

This announcement in support of women’s heart health sounds good for a number of reasons. One is the financial support that this professorship brings with it: almost $2 million. Dr. McManus explained why this secure funding is important for women’s cardiac research:

“In these tight economic times, we might be in danger of compromising Canada’s strong suit – and that is excellence in cardiovascular research. That’s what I care about.”

Meanwhile, Bobbe Wood, the president of the Heart and Stroke Foundation of Canada (another funder of this research chair), added:

     “Although cardiovascular disease is the leading cause of death in women, many women are not aware of either their risk factors or warning signs.

“By supporting Dr. Humphries’ work, we hope to address this serious gap in knowledge in both the public and the health care community.”

But Bobbe Wood already knows how to address this gap in a tangible, measurable fashion. She’s widely credited with bringing The Heart Truth awareness campaign to Canada in 2007, modeled on the American Heart Truth campaign started in 2002 by the National Heart, Lung and Blood Institute there. Early results: Canadian women’s awareness of heart disease as their #1 health threat went up by 8% in the first year of this national campaign.

Although throughout North America, women’s overall awareness of cardiovascular disease as one of their leading causes of death has nearly doubled since 1997, over one-third of all women still have no clue that heart disease is one of our biggest health threats. And a truly discouraging American Heart Association survey last year found that only  one-half of women said they would call 911 if they thought they were having symptoms of a heart attack.  As Bobbe Wood told me:   We’re still not there yet!” 

UPDATE:   Bobbe Wood’s words were prophetic. See this 2020 article: Women’s heart disease: an awareness campaign fail?

Moving from awareness to survival, one of my own personal worries remains the challenge of correctly diagnosing women’s cardiac issues when they strike. Diagnostics that have been designed, researched and recommended for male patients have not turned out to be as accurate in appropriately identifying cardiovascular disease in many women.  This may help to explain why women continue to be misdiagnosed in mid-cardiac event by Emergency Department physicians who send us home because we have “normal” cardiac test results – when they may not be.

Cardiologist Dr. Sharonne Hayes, director of the Mayo Women’s Heart Clinic in Rochester, Minnesota, offers this take on the problem with cardiac diagnostic tests in women:

”   Misconceptions about women’s heart disease grew roots decades ago. In the 1960s, erroneous assertions that heart disease was a man’s disease were widely spread to the medical community and to the public. This led to research almost exclusively focused on cardiovascular disease in men. Many clinical trials and research studies in the 70s and 80s excluded women or simply didn’t make an effort to enroll women in sufficient numbers to draw sex-based conclusions.”

Research on cardiac misdiagnoses reported in the New England Journal of Medicine, for example, looked at more than 10,000 patients (48% women) who went to their hospital Emergency Departments with chest pain or other heart attack symptoms. Women in their 50s or younger were seven times more likely to be misdiagnosed than men of the same age.* The consequences of this were enormous: being sent home from the hospital doubled the women’s chances of dying.

As important as clinical research may be in developing new diagnostic tests or treatment protocols, we know that, alarmingly, not all health care professionals are following the minimum care guidelines that are now currently in place to help patients get the appropriate treatment we need.

A study reported last year by the American College of Cardiology found clear differences in treatment between male and female heart patients despite highly similar clinical characteristics. Analysis of this study’s data showed that:

• men were 72% more likely to receive clot-busting drugs than women
• men were 57% more likely to receive an angiogram, a process in which dye is injected into the arteries of the heart so that doctors can identify blockages through X-ray imaging
• men were 24% more likely to have balloon angioplasty to reopen a blocked artery once identified via angiography
• the death rate among men was 48% lower than that for women during their hospital stay

The lag time between any published scientific research findings and actual real-life improvements in prevention, diagnostics or treatment can be interminably long.

Thus this Vancouver research chair at UBC means gratification long delayed.

It’s a good news announcement for women without actually having to produce good results where it counts: with real live women.

Mayo Clinic cardiologist Dr. Hayes explains this dilemma:

”   Research takes time to trickle down to the bedside or patient care. The research community is good at discovering new things, but slow in putting them into practice.”

She cites, for example, studies in the 1990s that showed ACE inhibitor drugs should be used in heart failure patients – findings that took at least seven years to trickle down to actual patient care.

Consider too how hard it was to convince U.S. interventional cardiologists to adopt the demonstrably safer radial (wrist) access for coronary catheterization procedures widely used as the default choice throughout Europe, Japan and Canada (as I’ve had done on two separate trips to the cath lab here).

Despite several years worth of good clinical studies** clearly showing that radial access angiography reduces the risk of major bleeding and other serious complications by up to 80% compared with the more commonly used femoral (groin) access known and loved by American interventionalists, barely 5% of cardiac catheterizations in the U.S. are done via radial access. 2022 UPDATE:  Radial access catheterizations now make up about 60% of angiograms done in the U.S. (3)

Here’s another reality. There exists a small old-growth forest’s worth of journal articles already published showing a disturbing chasm between men and women when it comes to getting appropriately tested, diagnosed and treated for cardiovascular disease.

A perfect example:  first-responders like paramedics are significantly less likely to provide standard levels of care to women who call 911 with cardiac symptoms compared to their male counterparts, according to a University of Pennsylvania study reported by the Society for Academic Emergency Medicine.  2019 UPDATE: See also: “Fewer lights/sirens when a woman heart patient is in the ambulance“

Researchers found “significant differences in both aspirin and nitroglycerin therapy” offered to women vs men. In fact, this study showed that of the women transported to hospital by ambulance who were subsequently diagnosed with heart attack, not one had been given aspirin by paramedics en route, as recommended treatment guidelines dictate.

And once women did arrive at hospital, both nurses and physicians working in Emergency Departments reported a bias towards looking for women’s heart attack chest pain symptoms, even though a majority later acknowledged that women often present with vague, non-chest pain symptoms during a cardiac event. And 40% of women report no chest symptoms at all during a heart attack. (4)

Even after the researchers adjusted for the possibility that age, race and baseline medical risk could have played a role in these apparent disparities, “the gender gaps in adherence to care protocols still remained”. The gender of the health care provider involved in each case also did not appear to change the findings; female ambulance attendants were just as lax in providing appropriate care to their female patients as their male work partners were.

But my question to these UPenn academics (and all other cardiac researchers) is this: so now that you’ve undertaken this research, presented your findings at conferences, maybe even been published in a medical journal (a considerable boost for your CV, no doubt), what real life changes have occurred as a direct and practical result of your study’s alarming findings? 

Did you try to initiate or even recommend immediate retraining of all ambulance paramedics in order to compel them to follow established clinical protocols for both their male and female patients? Or did your study end, as so many do, with just another CYA recommendation for further studies at some point in the near or distant future?

What we don’t need is yet another study saying: “Things are bad for women heart patients”.  Many of us who have actually survived this deadly disease despite being misdiagnosed – sometimes repeatedly – already know this from traumatic personal experience.  And emerging research continues to tell us over and over what we already know – that, as my irreverent heart sister and survivor of Spontaneous Coronary Artery Dissection Laura Haywood Cory succintly summed up such research results:

“Sucks to be female. Better luck next life.”

With all due respect for the good intentions of endowing university  professorships, and while certainly agreeing with Dr. McManus that “excellence in cardiovascular research” is well worth caring about, here’s what I care about more:

What I care about now are solutions at the bedside.

What I care about is ensuring that health care professionals can be trusted to follow existing treatment protocols, whether the patient on the gurney is male or female.

What I care about is convincing all Emergency physicians to stop saying: “You can’t be having a heart attack – because you’re  too young!” to women who are in mid-heart attack.

What I care about are the women who contact me out of sheer desperation with horror stories about being patted on the head while having their cardiac symptoms dismissed by health care professionals who are not yet aware of tricky non-obstructive diagnoses like Prinzmetal’s Variant Angina and Inoperable Coronary Microvascular Disease, or simply unwilling/unable to take women’s heart symptoms seriously. But I can do nothing to help these women other than to refer them to medical literature to bring back to their doctors (even though we already know how most docs will respond to those annoying ‘medical Googlers‘).

What I care about is expanded, more aggressive grassroots heart health awareness campaigns like The Heart Truth, and for Canadian cardiac leaders to launch specific survivor training programs that graduate community educators in heart disease prevention – in the same way that Mayo Clinic’s annual WomenHeart Science & Leadership Symposium For Women With Heart Disease programs have been doing with spectacular success every October for the past decade in Rochester.

What I care about is educating all health care providers about specific cardiovascular disease risk factors that are unique to their female patients. For example, during my stay in CCU after my own heart attack, every cardiologist and resident who saw me there asked the same questions about my possible cardiac risk factors (family history? smoking? diabetes?)  But not one physician – then or since – has ever once asked me about pregnancy complications (like the pre-eclampsia diagnosed before the birth of my first baby).

This was a link I had to discover myself much later through widely available research (at least one study funded by the Heart and Stroke Foundation) led by people like Dr. Graeme Smith at Queen’s University. His research suggests a four-fold higher risk of subsequent heart disease for maternity patients like me.

Dr. Smith told me recently:

“It’s not just cardiologists who are unaware of the link between pregnancy complications and cardiovascular disease. We did a survey study among doctors in Ontario: most general practitioners and obstetricians don’t know of this link, or at least don’t make any recommendations for women’s follow-up cardiac care. Women with pregnancy complications like this have a significantly greater 10-year, 30-year and lifetime risk of cardiovascular disease. “

♥  Note to the Canadian Cardiovascular Society: invite Dr. Smith to present at next year’s Congress!

I can only hope that the next time the Canadian Cardiovascular Congress rolls around to the West Coast three years from now, real-life topics like these about women’s heart disease might actually make it onto the conference program.

IMPORTANT UPDATE:

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 atypical symptoms such as shortness of breath, nausea or vomiting, and back or jaw pain.”  Let me repeat: this was the AHA’s first scientific statement on women’s heart attacks in their NINETY-TWO YEAR HISTORY.

NOTE FROM CAROLYN:   I wrote much more about adjusting to a new cardiac diagnosis 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 30% off the list price).

See also:

Researchers Openly Mock the ‘Myth’ of Women’s Unique Heart Attack Symptoms

How Does It Really Feel to Have a Heart Attack? Women Survivors Tell Their Stories

Diagnosis – and Misdiagnosis – of Women’s Heart Disease

14 Reasons To Be Glad You’re A Man When You’re Having a Heart Attack

His and Hers Heart Attacks

The “Heart Attack Myth”: Revisiting the Controversial Canadian Study

Mayo Clinic: “What are the Symptoms of a Heart Attack for Women?”

Heart Disease: Not Just A Man’s Disease Anymore

How Doctors Discovered That Women Have Heart Disease, Too

Gender Differences in Heart Attack Treatment Contribute To Women’s Higher Death Rates

How a Woman’s Heart Attack is Different From A Man’s

Women Heart Attack Survivors Know Their Place

Pregnancy Complications Strongly Linked to Heart Disease

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(1) Pope JH, Aufderheide TP, Ruthazer R, et al. “Missed diagnoses of acute cardiac ischemia in the emergency department”. New  Engl J Med. 2000;342:1163-1170.

(2) Jolly SS, Amlani S, Hamon M, et al. “Radial versus femoral access for coronary angiography or intervention and the impact on major bleeding and ischemic events: A systematic review and meta-analysis of randomized trials”. Am Heart J 2009; 157: 132-140

(3) Doll JA, Beaver K, Naranjo D, et al. “Trends in arterial access site selection and bleeding outcomes following coronary procedures, 2011-2018.” Circulation: Cardiovasc Qual Outcomes. 2022;15:e008359

(4) Canto JG, Rogers WJ, Goldberg RJ, et al. Association of Age and Sex With Myocardial Infarction Symptom Presentation and In-Hospital Mortality. JAMA. 2012;307(8):813-822.

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