NY Times Series: 7 Issues Facing Women - Better Not Get Sick (Day 5 of 7)
DAY 5 | BY MAYA DUSENBERY
Better Not Get Sick
In 1989, a landmark study concluded that daily aspirin may reduce the risk of heart disease. One limitation of the trial? It enrolled 22,071 men and not one woman.
It wasn’t a one-off problem. In the early 1990s, women’s health advocates had begun to sound the alarm: Much of our biomedical knowledge was based on research conducted largely on men.
The consequences of this are profound, and, despite some progress in the last few decades, remain so to this day: Medical professionals — think nurses, doctors, medical school professors — not only know comparatively less about women's bodies and conditions than they do about men’s, they also have been conditioned to not trust women when women report their own symptoms and experiences.
Nowadays, while both sexes are usually included in clinical studies, researchers still don’t routinely analyze their results to detect possible differences between the two. And women are still underrepresented in early-stage clinical trials. Even when humans aren’t involved in research, it remains the norm to rely on male animals in preclinical testing — a problem the N.I.H. began to formally address only in 2014. This bias extends even to studies using cell lines, despite evidence that XY and XX cells can behave differently.
“We literally know less about every aspect of female biology compared to male biology.”
— Dr. Janine Austin Clayton, associate director for women’s health research at the National Institutes of Health
Indeed, an ever-growing body of research has revealed that there are often important, gendered differences in everything from how many drugs are metabolized to the common symptoms of a heart attack.
The value of considering such differences has been underscored by the coronavirus pandemic.
Data from other countries — as well as some localities in the U.S. — suggest that men are dying from Covid-19 at higher rates than women. And there are known — if still understudied — differences in men’s and women’s immune response to other infectious diseases. Yet the U.S. still isn’t collecting complete data disaggregated by gender. At this point, researchers know little about how — let alone why — Covid-19 symptoms and progression may differ in men and women. Experts warn that failing to detect and understand gender differences could result in harm as we work to develop effective treatments and a vaccine.
While severe Covid-19 appears to hit men hardest, other diseases disproportionately affect women — and they’ve tended to be understudied in general. Many conditions that mostly affect women — from autoimmune diseases to migraines to “female-pattern” forms of heart disease — garner relatively few research dollars and little attention in medical education. In fact, millions of American women suffer from poorly understood conditions — like fibromyalgia and chronic fatigue syndrome — that many health care providers don’t even view as legitimate medical conditions.
This knowledge gap is exacerbated and reinforced by a tendency to downplay, normalize or deny women’s self-reports of their symptoms — at least until a laboratory test or a scan provides objective evidence of the cause.
The result is that when women seek medical attention, many find their concerns aren’t taken seriously by health care providers. For example, a 2017 study of young adults with chronic pain, conducted by researchers at the University of Wisconsin-Milwaukee, found that the women were more likely than the men to report that a physician had dismissed their pain. As the authors of the groundbreaking paper “The Girl Who Cried Pain” wrote, because of unconscious gender stereotypes, women are at greater risk of having their symptoms “discounted as ‘emotional’ or ‘psychogenic’ and, therefore, ‘not real.’”
The consequences of these biases can be dire.
Studies have found that women tend to face longer delays in getting testing and treatment. In the emergency room, women with abdominal pain go 16 minutes longer without pain medication than their male counterparts do. And when reporting heart attack symptoms, they wait 21 minutes, compared with 15 for men, to get an electrocardiogram. Too often, women’s diagnoses are missed entirely. They are one third more likely than men to be erroneously sent home from the hospital when suffering a stroke.
For less acute problems, the diagnostic search may take months or years — even for conditions common in women. For example, it takes a full decade, on average, to get a diagnosis of endometriosis, which affects over six million Americans and can be debilitatingly painful.
Even once a diagnosis is made, the gender gaps persist. When admitted to the hospital for a stroke, women are less likely to receive the clot-busting drug tPA. After a heart attack, women are less likely to get stents, antiplatelet therapy and statins, in large part because cardiovascular disease, despite being the leading killer of American women, is stereotyped as a “man’s disease.” Over all, among critically ill older patients, women get fewer lifesaving interventions.
These gendered disparities are compounded by other pervasive biases within the medical system — from weight bias to transphobia to racism. For example, women of color, especially Black women, are routinely denied adequate pain treatment, whether because of false stereotypes that they are more likely to abuse drugs or myths about racial physiological differences that date to slavery. The inferior medical care that patients of color receive across the board contributes to the maternal mortality crisis in America that disproportionately impacts Black and Native American women, who are roughly three times as likely to die from pregnancy-related causes as their white counterparts.
It’s unclear whether therapies studied largely in men are equally safe and effective for women.
In 2013, two decades after first approving the sleeping aid Ambien, the Food and Drug Administration slashed the recommended dosage in half for women. Studies had revealed that because women metabolize the drug more slowly than men, they were at risk of being too drowsy to safely drive the next morning. Considering how many other medications on the market were under-studied in women, it’s perhaps no surprise that women are 50 to 75 percent more likely than men to have an adverse drug reaction.
In recent years, there have been growing efforts to better integrate information about sex and gender differences into medical education and offer unconscious bias training for health care providers. In some cases, greater standardization of care could help. For example, Johns Hopkins Hospital eliminated a stark gender disparity in the percentage of trauma patients getting proper blood clot prevention — and improved outcomes for all patients — by implementing a checklist.
But experts say that fully closing the gender knowledge gap in health will require a wholesale “culture shift in science.” And ensuring that women are always believed when they say they’re sick will require a shift in the culture at large.