(INTERVIEW) Carolyn Thomas: Are Women Left Behind in Heart Disease Research?

BlogHer Original Post

Did you know that more women die from heart disease than men in our country? It's true. But when it comes to researching treatments for heart disease, women are being left behind. So I wasn't surprised when I read a recent article that highlighted the continued disparities of heart disease treatment between men and women.

From an ABC News article -- Heart Device Studies Leave Women Behind:

Cardiovascular device development remains skewed against women, with too few trials adequately addressing gender despite long-standing requirements by the FDA, researchers found.

I contacted Carolyn Thomas of Heart Sisters to ask her if I could get her thoughts on this latest report for BlogHer, and she was kind enough to agree. Carolyn writes about women and heart disease from a very unique perspective: She is a Mayo Clinic-trained heart attack survivor. What she has to say about women and heart disease, we ALL need to hear.

My first question was...

With heart disease being the leading cause of death among women -- Did this report surprise you?

Carolyn's response:

Sadly, this report does not surprise me -- but it does discourage me. The prevailing attitude seems to be that if health care treatments work for men, shouldn’t they also work for women? The Society for Women’s Health Research has some interesting answers to this question. I wrote an article in 2009 called "Cardiac Research: Where Did All The Women Go?: on my blog Heart Sisters, including a link to SWHR's compelling statistics.

Then I asked...

How important do you think it is for women to be included at an equal rate to men in these studies?

Carolyn's response...

Of course it's important! In almost every area of our health, there are significant differences between men and women’s responses to both disease and treatment. But because women are not yet equally represented in many areas of medical research -- not just cardiology research -- our health care professionals have had to assume that diseases and conditions affect both women and men in the same way.

And women's medical research until very recently has generally focused on what we call the ‘bikini approach‘ to our health: breasts and reproductive organs.

How concerned should women with heart disease be about this latest report?

Carolyn's response...

Any report that indicates "incomplete safety and efficacy details for women" is discouraging and alarming for us, and it comes back to that gender gap in research trials. We know that women do volunteer for hormone or breast cancer clinical trials -- but don’t seem as interested in participating in cardiac research. This is likely because many women still mistakenly believe that heart disease is a man’s problem, even though it is the #1 killer of women, and indeed kills more women every year than men.

But women are not alone in our ignorance. In a 2005 American Heart Association study, physicians were asked if they were aware of the fact that cardiovascular disease kills more women than men each year. The results were absolutely shocking: Only 8% of family physicians knew this fact, but (even more frightening!) only 17% of cardiologists were aware of it.

Are there other areas of heart disease treatment where there is a clear lack in the research of women?

Carolyn's response...

Personally, I'm particularly interested in our current cardiac diagnostic tools - mostly because, like many women, I was sent home from the E.R. in mid-heart attack with a misdiagnosis of acid reflux, despite presenting with textbook heart attack symptoms like crushing chest pain, nausea, sweating and pain radiating down my left arm. Yet all my cardiac diagnostic tests that day were "normal" -- EKG, blood tests, and a treadmill stress test.

Without accurate gender-specific diagnostic tests, how can our physicians even begin to decide on appropriate life-saving treatment, drugs or devices for us? Until these cardiac tests are researched and developed, however, women heart patients will continue to be sent home from the E.R. misdiagnosed with everything from indigestion to anxiety or menopause (a very handy all-purpose diagnosis!)

The stats on gender differences in diagnostic testing are alarming. Research 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. Investigators found that women younger than 55 were seven times more likely to be misdiagnosed than men of the same age. The consequences of this were enormous: being sent away from the hospital doubled the chances of dying.

Shortly after my own heart attack in 2008, I attended the WomenHeart Science & Leadership Symposium for Women With Heart Disease at Mayo Clinic, where I was shocked to learn that many diagnostic tools widely considered to be accurate in identifying heart disease in men are far less accurate in women -- particularly in women with these specific types of cardiac events that are far more commonly seen in 'us' than in 'them':

1. single vessel coronary artery disease

2. non-obstructive coronary artery disease (like coronary microvascular disease or Prinzmetal's Variant Angina, a coronary artery spasm condition)

3. SCAD -- spontaneous coronary artery dissection (up to 80% of SCAD cases occur in young healthy women with no cardiac risk factors)

Here are some other areas of heart disease treatment in which the research gender gap is evident. When Dr. Wendy Tsang reviewed landmark cardiac clinical trials published over a 10-year period in three prestigious medical journals -- The Journal of the American Medical Association, The Lancet, and the New England Journal of Medicine -- she found that although women comprise 53% of patients with cardiovascular disease, in clinical trials they represented only 34% with cardiac arrhythmias, 29% of subjects with coronary artery disease, and 25% with congestive heart failure. That's just not good enough.

My last question...

Do you think it is going to take a government mandate to close this gender gap?

Carolyn's response...

Back in the early 1990s, the National Institutes of Health implemented sweeping policy changes in research protocol to ensure fair representation of women in cardiac research trials. So you may well ask: "What the heck happened?"

But despite the government's best intentions, there may well be some truly sticky obstacles to achieving gender balance in these trials. Under-representation of women in cardiac research could be partly because they are asked to participate less often than males. Women don't volunteer to participate even when asked because they may believe that heart disease is really just a man's problem. Women also tend to develop heart disease later in life than men do; some trials have age restrictions that limit the enrollment of research participants over the age of 70. However, Dr. Wendy Tsang’s research does show women do make up over 60 per cent of heart disease prevention trials that investigate exercise and diet. Could this be due to gender stereotyping?

Thank you Carolyn, I think every woman who reads this will learn something she didn't know about heart disease and why closing the gender gap in research is so important. 

Has heart disease touched you or your family?  Are you concerned about the lack of women in heart disease studies?  I hope you will let us know your thoughts in comments.

Contributing Editor Catherine Morgan
Also at Catherine-Morgan.com

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