by Carolyn Thomas ♥ @HeartSisters
This editorial, “What Women (and Clinicians) Don’t Know Hurts Them“, originally appeared in the Journal of the American College of Cardiology. As a woman with heart disease, I wanted to immediately read it to find out what might be hurting me.
But as is common practice in most medical journals, this editorial was behind a paywall, so it was not available for heart patients like me, or anybody else who wasn’t a subscriber to the journal.
I could pay a fee of $35 for the privilege of reading this one article, but the reality is that I can’t afford to pay for articles that aren’t being published in what’s known as an open access journal.*
So I’d like to thank the editorial’s author, University of Iowa cardiologist Dr. Jennifer Robinson, for granting my direct request to her for access to a paper that seems important for all women to read. Here it is:
What Women (and Clinicians) Don’t Know Hurts Them
by Jennifer G. Robinson, MD, MPH
The decline in cardiovascular disease (CVD) mortality has plateaued, keeping CVD the leading cause of death among women (1).
Women have experienced slower declines in CVD than men, and recently, premature mortality from coronary heart disease began increasing in U.S. women over 50 years of age (2). Few women have ideal cardiovascular health, and risk factor treatment remains sub-optimal (1), with substantial disparities in risk factor control in women compared to men, and in African-American women compared to white women (3).
By 2035, almost 45% of women will be living with some form of CVD, with projected direct and indirect costs of almost $500 billion per year (4).
In response to these alarming statistics, the Women’s Heart Alliance undertook nationwide surveys of CVD awareness in women age 25 years to 60 years, primary care physicians, and cardiologists (5).
As presented in this issue of the Journal, they found that although 74% of women reported having one or more CVD risk factors, women had only modest levels of CVD awareness.
Women reported more often being told to lose weight rather than having their CVD risk factors addressed. An unfortunate consequence was that 45% of women cancelled or postponed a physician appointment until losing weight.
The majority of cardiologists (82%) believed that they were well-prepared to assess women’s CVD risk, a rate somewhat higher than primary care physicians (64%) who deliver the majority of care for women in this age group.
Nonetheless, both groups of physicians infrequently implemented all eight American Heart Associations guidelines for risk assessment (16% and 22% respectively).
On the bright side, both women and physicians were receptive to awareness and education campaigns, and supported more research in women’s CVD health.
Decades of cardiovascular prevention research have clearly identified the lifestyle habits and risk factors that cause CVD (1).
Lifestyle is the foundation of cardiovascular disease risk reduction efforts, and developing healthy lifestyle habits early in life will pay dividends over a lifetime (6).
Helping women overcome barriers to increasing physical activity and healthier eating habits may avoid the stigma of focusing on weight loss. Women are often the gatekeepers for family meals, activities, and health care, and a focus on healthy lifestyle habits may also encourage primordial prevention in the family as a whole.
Clinical trials have also established that controlling risk factors reduces CVD risk in women and men (7,8).
Preventive drug therapy plays an increasingly important role in women with advancing age, especially if a woman has been unable to maintain healthy lifestyle habits.
Efforts to increase use of evidence-based preventive medication will have the greatest measureable impact on reducing incident CVD events in higher risk women and recurrent events in women living with CVD.
Primary prevention statin and aspirin therapy requires estimation of 10-year atherosclerotic cardiovascular disease (ASCVD) risk (7,9). The (ACC)/American Heart Association ASCVD calculator performs quite well in both white and African American women in the general U.S. population (10,11).
Statins reduce the risk of stroke as well as coronary heart disease in women, with similar reductions in overall CVD risk in women and men (7). The remarkable safety record for statins in properly selected patients must be empha- sized to overcome public- and to some extent provider-hostility toward statin therapy.
Updated hypertension guidelines are in progress, but the general expert consensus is that repeated elevations in systolic blood pressure >140 mm Hg, or diastolic blood pressure >90 mm Hg after dietary modification should be treated with drug therapy (12).
Women have the unique opportunity to receive regular CVD health evaluations during their annual gynecologic examinations.
Pregnancy as a stress testcan help identify women at higher risk of developing CVD (8). It is essential to increase the comfort of obstetrician-gynecologists with performing CVD risk assessment and lifestyle counseling, accompanied by establishing referral pathways to other primary care providers or cardiologists committed to prevention, who also need to address reproductive safety issues with preventive drug therapies (7,13).
The national awareness campaign planned by the Women’s Heart Alliance will no doubt build on the rich information obtained in these surveys. But to successfully improve risk factor control, awareness efforts must be coupled with quality clinician education and implementation programs (14). Team-based approaches and non-physician–led prevention programs have been shown to improve risk factor control. It will be essential to partner with a range of professional organizations to have evidence-based continuing medical education programs in place when the public awareness campaigns begin. See also: Women’s heart disease: an awareness campaign fail?
Research into the most effective governmental, community, workplace, and health care system interventions and technological innovations should guide efforts to increase access and implement risk factor control programs (15).
NOTES FROM CAROLYN:
1. * Other than a direct request to the author of a paper (who are almost always very agreeable), I’ve found a few ways to access journal articles hidden behind paywalls: try The Open Access Button or Sci Hub.
2. I wrote much more about addressing cardiac risk factors in my book A Woman’s Guide to Living with Heart Disease (Johns Hopkins University Press, 2017). You can ask for this book at your local bookshop, or order it online (paperback, hardcover or e-book) at Amazon – or order it directly from Johns Hopkins University Press (use their code HTWN to save 30% off the list price when you order).
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Q: Have you ever had a medical issue that was displaced by advice to lose weight?
See also:
Six ways NOT to motivate patients to change
What prevents heart disease “better than any drug”?
Report card: my month of eating Mediterranean
How to stare down that plate of chocolate chip cookies
Heart-smart food rules: your dietary dos and don’ts
Heart Sisters 
My primary care physician nor my cardiologist have ever mentioned my weight. They look after me and keep tabs on my symptoms. They look for ways to reduce my medications instead of increase them. I love them both doctors.
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Annie, keeping tabs on symptoms and looking for ways to reduce medications (“deprescribing”, as they call it) are excellent qualities in a physician!
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Hi Carolyn,
This was a highly enlightening topic and I can truly say that my PCP did do everything within her power to assess if my problems were cardiac. My cardiologist said that she had gone above the norm and had I presented to him with my problems and had the same test results, he would have said non cardiac.
Not even my sudden rise in BP would have had him do any invasive procedures. In that respect, I still find myself standing alone.
Robin
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That’s an interesting case of dueling physicians, Robin: your PCP totally on board in investigating every possible avenue, while your cardiologist sounded ready to dismiss all issues right off the bat.
No wonder patients are so frequently confused…
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NOTE FROM CAROLYN: This reader comment has been deleted because it was attempting to sell you a “miracle cure” that, if indeed it ever existed, would have already been patented and marketed by Big Pharma. For more info on how you too can get your comment deleted, please read my fascinating Disclaimer page.
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When I went to my then-primary care doc with many symptoms (that later were shown to be hypothyroidism, diabetes insipidus, hypertrophic cardiomyopathy, and more) he looked frustrated at my failure to produce an easy diagnosis and said, “You can do things to feel better!”
I asked what I could do that I am not already doing. I ate well and swam 3 or 4 times a week. “You could lose weight!” I was dumbfounded, and then acknowledged that I am one of many who are carrying 5 or 10 more pounds than we wish, but doubted that losing that bit would change how I felt.
It was then that he actually looked at my numbers and said, “Maybe not.”
But that directive was that automatic!
Then he wrote Anxiety on my record and referred me to therapy. That had negative consequences for my care, and for nearly a decade.
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Hello Kathleen – advising a 5 pound weight loss (not 50, but FIVE!) to a person with significant medical symptoms seems like clutching-at-straws dismissal, an “automatic directive” indeed!
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One time I was at a PCP visit and was concerned about a symptom I had where my arm muscles would ache so terribly I could not even hold a book up to read, or unload a dishwasher. The PCP, a woman, said, “Well if you would get some exercise and lose some weight, you probably won’t have a problem.”
She said this to a person with a diagnosis of Cardiomyopathy, on statins and with a family history of Myasthenia Gravis…. Can you tell me there was nothing else to investigate???
Over time the symptom continued, Myasthenia was ruled out. However, once I had my ventricular myectomy it seemed to disappear…. So was probably related to low cardiac output.
When physicians give a blanket declaration … sometimes even a threat about losing weight without looking to the cause and the best way to help the patient … I consider it an abuse of power by a person in a position of trust.
People look up to their doctor and hundreds of thousands of women are sent down the road of yo-yo dieting which is worse than being overweight. It causes weight gain, diabetes, low self-esteem, alters metabolism and more.
As a victim of yo-yo dieting; I co-wrote a book way back in 1996 called “The Ten Habits of Naturally Slim People”. It is one of the earliest books on mindful eating and breaking the yo-yo dieting cycle.
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Thanks for bringing up the subject of yo-yo dieting, Jill. I’ve essentially been on a diet since my teens (started when I was a skinny farm kid, by the way, who was reading far too many esteem-crushing articles about not being skinny enough in Seventeen magazine, among others) and my entire history as a serial dieter is losing and gaining the same 20 pounds, on every possible type of diet you could name, for my entire adult life. Now that’s classic yo-yo dieting. “Worse than being overweight” is right. Thanks for sharing the name of your book.
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You are a godsend. I bought and read your book. I will be thinking of you on Tuesday, the day of my angiogram. I don’t have a weight problem but most likely artery wall spasms.
Thank you again,
Kathy
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Thanks for your kind words, Kathy. Good luck on Tuesday!
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I wasn’t told to lose weight at all after my STEMI heart attack. They pushed a lot of pills including statins. I quickly discovered statins were a hell for me but my numbers were excellent anyway. I managed to lower the LDL even more to 60! Mostly by changes to my diet. I didn’t lose weight but my numbers are great! I am 70 so maybe that’s why my doc never discusses my weight??
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Hello Chris – it seems that being advised to lose weight wasn’t listed on its own, but as it compared to how often doctors assessed all of a woman’s cardiac risk factors. I think the distressing thing about this survey was that, of the women who HAD been told to lose weight, “…45% of them cancelled or postponed a physician appointment until losing weight.” Now there’s a headline for you….
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Yes, Yes, and Yes….I used to dread going in for annual check ups because I had to get on the scale and get a lecture about my weight. It has only been in the last decade or so that I have begun telling the nurse I do not need to get on the scale in this office with my shoes and clothes etc. I weigh myself everyday for fluid retention.
I will tell you my dry weight naked is 210 lbs and by 8 pm I can sometimes weigh up to 216 on a bad day. By the way dear doctor, I do not need a lecture, I have lost 22 lbs over 1 1/2 yrs by eating healthy, treating my diabetes and getting in some walk time.
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Thanks Jill – your final statement was such a good point.
A few years ago, I lost over 20 pounds within a year, and then (like virtually all dieters) I started gaining some weight back after a painful knee injury kept me from my usual exercise routine. I was feeling extremely discouraged about this rebound weight gain when I went in to see my family doc (a routine visit that included my annual weigh-in). She came into the exam room and made a reference to the numbers on the scale that day. I immediately became defensive and started to explain what was happening, when I heard her continue: “Wow! You’ve lost over 15 pounds since we weighed you last! That is absolutely fantastic!”
Here I was already feeling bad about myself – instead of feeling good about having dropped 15 pounds, and that is all she saw!
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Because it is a sexist system. I have MVP, Ehlers Danlos and POTS – still not been referred to cardio even though I keep passing out.
They have me on oxy and fentanyl and then gave me propronol which with my low blood pressure and EDS gave me a hernia. I got smart because I want to live. Stay away from the doctor.
The best doc I ever had was in Brighton, Dr Chung, a female doctor. Every other male and female doctor I have had in London has been soooo bad. Really bad. Like – Mrs Harris, there is nothing wrong with your cervix after a biopsy of my bladder was done. Your entire system has been checked. Your womb is in this position and is clear of Endometriosis. I ask them to check results.
The decision is upheld with the three consultants and my GP. No one listens. I had had a hysterectomy years before in another hospital. London NHS system and Hertfordshire system is broken.
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That’s remarkable Sam – that your doctors were somehow able to comment on a womb that had already been surgically removed? I’m not a physician, but I have heard from others with EDS that an increased risk for inguinal hernia is associated with EDS because of impaired collagen metabolism, whether you’re taking proponol or anything else.
A good example of the importance of being your own best advocate, no matter the diagnosis.
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my friend died after starting proponal and I was put on it just before her – although as I had a hernia immediately I did take myself off it – I did report this back to the doctor. They said it was suicide but I’m not sure it was as she was asking for help like most of us and being denied service.
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