The invisible woman? The challenge at the doctor's office every woman needs to know about

A pervasive gender bias in medicine leads female patients to be misdiagnosed or dismissed as complainers. Meet the doctors fighting for change.
Jovanna Tosello / TODAY

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/ Source: TODAY
By A. Pawlowski

A woman could be making all the right decisions about her health and still be betrayed at the doctor’s office.

Take the 35-year-old patient referred to Dr. Marjorie Jenkins with fractured vertebrae. For years, the woman had suffered from stomach problems and had always been told she had irritable bowel syndrome. But the cause was actually undiagnosed gluten intolerance, which led to osteoporosis in her 30s.

Dr. Alyson McGregor, an emergency medicine physician, often treats young women who are having a heart attack, but she has to fight to convince other doctors to recognize what’s happening.

Women have different ways of having a heart attack than men, so when traditional tests — based on men’s bodies — show everything is “normal,” female heart patients are often told it must be reflux or anxiety: "Women are stigmatized as being anxious," said McGregor, author of the upcoming book, "Sex Matters: How Male-Centric Medicine Endangers Women’s Health and What We Can Do About It."

But in reality, doctors don’t have the diagnostic tests yet to uncover heart problems more common in women, like microvascular disease and spontaneous coronary artery dissections.

“It’s the women who keep coming in over and over again without a diagnosis that I see so often that it just makes me feel we have to do better at figuring out women’s specific physiology,” McGregor, director for the Division of Sex and Gender in Emergency Medicine at Brown University, told TODAY.

“Medicine is always evolving — I feel this is the next evolution of our understanding of how to care for each other.”

It’s not malice but a pervasive, implicit sex and gender bias in medicine that’s leading female patients to be misdiagnosed, neglected, dismissed as complainers, accused of being overanxious, mislabeled as depressed or told their symptoms are all in their heads, said physicians who are fighting to change the system. What will it take to improve how women, especially those with chronic health conditions, perceive they are treated by doctors?

TODAY is launching "Dismissed," an ongoing project exploring the experiences of real patients, the momentum among doctors to confront sex and gender biases and what women can do to be heard.

In the "Dismissed" survey, released today with Survey Monkey, over half of women think gender discrimination by doctors is a serious problem, compared to 36% of men.

TODAY/SurveyMonkey

It’s a sex and gender gap every woman needs to know about.

Women may have different complaints than men — even with similar health conditions — and they experience pain differently, but most doctors are trained to identify and treat symptoms in men, making it less likely to correctly diagnose female patients, the experts warned.

“It’s terrible. It’s a very big problem,” Dr. Janice Werbinski, executive director of the Sex and Gender Women’s Health Collaborative and a clinical associate professor at Western Michigan University Homer Stryker M.D. School of Medicine, told TODAY. “It’s everywhere.”

TODAY/SurveyMonkey

“Women can be harmed by practicing one-sex medicine or gender-blind medicine,” said Dr. Jenkins, a professor of medicine at Texas Tech University Health Sciences Center and chief scientific officer at the Laura Bush Institute for Women’s Health. “We need to stop ignoring the mountain of evidence that we have that men and women are different.”

“This is not a fad — this is about science. The evidence shows that being male or female has profound effects on your health,” added Dr. Janine Austin Clayton, director of the Office of Research on Women’s Health at the National Institutes of Health.

“We really want considering potential differences between men and women to be as common as looking right and left before you cross the street.”

“It’s the women who keep coming in over and over again without a diagnosis that I see so often, that it just makes me feel we have to do better at figuring out women’s specific physiology,” said Dr. Alyson McGregor.Courtesy of Dr. Alyson McGregor

It’s hard to specifically measure how big of a problem the sex and gender bias in medicine is because it’s difficult to pin down how patients are being treated differently, Clayton said.

But there are many clues.

The prevalence of the bias and its impact on women has been most studied in heart medicine — now the subject of research for more than 20 years — but it’s also mounting in cancer, including lung, kidney and bone marrow transplants for cancer, said Dr. C. Noel Bairey Merz, director of the Barbra Streisand Women's Heart Center and professor of medicine at Cedars-Sinai Medical Center.

Recent studies have found:

  • Heart disease is the No. 1 cause of death in U.S. women, but only 22 percent of primary care physicians and 42 percent of cardiologists feel well prepared to assess a woman’s cardiovascular disease risk.
  • The bias in detecting and treating heart attacks has led to women having a “significantly higher” mortality than men. Researchers estimate thousands of deaths in women could have been prevented had care been equal between the sexes.
  • Every minute counts during a heart attack, but men get rushed to the catheterization lab quicker than women — as measured by a metric known as “door-to-balloon time“ — so that doctors can open a blocked artery.
  • Osteoarthritis is the most prevalent chronic condition among women, but doctors give less medical information and encouragement about undergoing a total knee replacement to female patients who have chronic knee pain than to men.
  • Women with acute abdominal pain in the emergency room have to wait longer than men to receive pain medication, an average of 65 minutes compared to 49 minutes for men.
  • Women's immune systems are more robust than men's, which is why women have many autoimmune conditions, McGregor said. But more than 40 percent of women eventually diagnosed with a serious autoimmune disease had at one point been told by a doctor they were "just too concerned with their health or they're a hypochondriac," said Virginia Ladd, founder of the American Autoimmune Related Diseases Association.

Why it’s happening: The era of 'Bikini medicine'

Doctors used to think any health differences between men and women were strictly isolated to reproductive organs. Women’s health care was sometimes dubbed “bikini medicine” because it focused on breast disease and gynecologic/obstetric issues, with everything else thought to be the same as in men’s bodies, said Dr. Kim Templeton, past president of the American Medical Women's Association and professor of orthopedic surgery at The University of Kansas Medical Center.

“We now know that there are differences between the sexes in every health condition. Any organ system that you pick, any health condition that you pick,” Templeton said.

“This is not routinely included in health professionals’ education, including in medical schools.”

Medical education was set up to teach that a 70-kilogram (154-pound) male was the norm, with everyone else a “variant” of that, she noted.

The problem is that teaching about sex differences is still not being recognized as a need in most medical schools, with only pockets of institutions paying attention to the issue, Werbinski said. More than a dozen schools are now using curricular materials on sex and gender specific medicine created by the Laura W. Bush Institute for Women’s Health, for example.

But the accrediting body for U.S. medical schools doesn’t list teaching about sex and gender differences as a requirement for accreditation, she noted.

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That body, the Liaison Committee on Medical Education, which is jointly backed by the Association of American Medical Colleges and the American Medical Association, calls for medical students to "learn to recognize and appropriately address gender and cultural biases in themselves, in others, and in the health care delivery process."

The accreditation standards are intentionally broad, said Stuart Heiser, a spokesman for the Association of American Medical Colleges.

"Neither the AAMC nor LCME prescribe specific curricula, leaving it up to each school to set its curricula based on its individual mission and local area needs," Heiser noted.

The standards address the issue appropriately, added Dr. Alison Whelan, chief medical education officer at the Association of American Medical Colleges.

Medical schools do recognize the need to teach about the differences between men and women in health conditions and the subject is more interwoven now than when she went to medical school, Whelan said. But she could not express an opinion about whether schools are adequately covering this area.

"I'm aware women and others may feel that they're not heard as well as they should be. So there's room for continued improvement in medical school and ongoing learning throughout our profession," Whelan said.

Werbinski and her colleagues at the Sex and Gender Women’s Health Collaborative have made it their mission to integrate sex and gender knowledge into the curriculum, raising awareness by engaging with medical associations and the leaders of medical schools at national summits and symposia. Another summit is coming up in 2020.

Once you see the evidence, you 'can't unsee it'

“When we present this to a room of 250 professionals — the issues and the science — they go, ‘Oh my god, I can’t believe we’re not teaching this,’” Jenkins said. “Once you see it, you can’t unsee it.”

The doctors want medical students to advocate for this curriculum in their schools, too, because schools listen to the students.

The key word is “integrate” — not just offer separate, elective courses that only "interested" students take, which often happens now. When Jenkins meets someone skeptical about the notion of integrating the information everywhere, she asks: When would your patient NOT have a sex and gender?

“It’s not a division, it’s not a specialty. It’s like nutrition — everybody has to know it. So it needs to be woven throughout the entire curriculum,” Werbinski said. Asked to describe the current state of progress, she estimated most schools are currently “very far” from making that happen, though Jenkins saw “really good momentum.”

“If it’s not in every course, it’s not enough. If it’s not on every exam, it’s not enough,” Clayton added.

Merz, Werbinski and their colleagues have also been pushing the National Board of Medical Examiners, which manages the tests that medical students must pass to become doctors, to include questions about sex and gender differences. The hope is that since medical schools teach to the test, they’d have an incentive to include those topics in their curricula. But right now, there’s still “very, very little” about sex differences on medical board exams, Clayton said, though Merz saw anecdotal evidence it’s slowly happening.

“We’ve been trying to tackle this from every angle available, but organized medicine is like a huge cruise ship and it’s hard to [change course]. It’s hard to introduce a need for a new curriculum because the curriculum is already so jam-packed,” Werbinski said.

“If we don’t educate the next generation of providers, we will just perpetuate this across the generations for the future,” Jenkins added.

The problem with studies: 'Women are still invisible'

There’s mounting evidence men and women respond differently to the same drugs. Take the sleep aid Ambien, which women metabolize slower than men, leading to a higher risk of “next-morning impairment” and prompting the FDA to lower the recommended dose for female patients.

Women who are sedated with propofol for a procedure wake up earlier than men, so they need more frequent dosing of that medication, McGregor said.

It shows the importance of testing medicines in both sexes, but until the early 1990s, women were routinely excluded from clinical drug trials. Researchers feared the potential of harming a fetus during pregnancy and viewed women as “confounding and more expensive test subjects” because of their fluctuating hormone levels (while ignoring the variability in men’s hormone levels). They considered men to be the “norm” and thought women would respond to drugs in exactly the same way.

The inclusion of women in clinical research finally became U.S. law in 1993 and an NIH policy requiring sex to be considered as an important biological variable in both vertebrate animal and human studies went into effect in 2016.

Now, over half of the people who participate in studies funded by the NIH are women, Clayton said.

But there’s still a problem: Most studies still don’t report their results for men and women separately.

Almost 70 percent of biomedical research papers published in 2016 did not report on the sex of study samples, The Lancet reported in February. Medical specialties with the least amount of sex-related reporting included hematology (the study of disorders of the blood and bone marrow), immunology and pharmacy.

So a doctor who looks at the outcome of a clinical trial still won’t know if the medication worked differently in men and women, whether they experienced different side effects or if the dosage recommendations should vary depending on the patient.

“If you don’t report the results by sex, we call that ‘Add women and stir.’ Women are still invisible,” Werbinski said. “There’s a lot of information that’s just hidden in there.”

Medical journals could reject such studies, but they haven’t done that, she added. Getting those journals — which have “a really key gatekeeper role” — to require research to be broken down by sex is the next step in the battle, Clayton noted.

The medical journals could follow the Sex and Gender Equity in Research (SAGER) guidelines, developed by the European Association of Science Editors in 2016, calling on study authors to explain how sex and gender were taken into account and report the results by sex. But the guidelines are voluntary and many journals don’t follow them, Clayton said. Journal editors should insist on sex-related reporting, but they have been "slow to adopt" universal standards, researchers noted in The Lancet.

Still, there’s some progress being made on this front: As of 2017, researchers who conduct certain clinical trials supported by the NIH must now report their results by sex in a publicly available database as part of the 21st Century Cures Act.

“We’re so excited that in the future, doctors and clinicians will be able to look at that data. Even if it isn’t in the [journal], those results are going to be reported in clinicaltrials.gov,” Clayton said. “We’ll have a powerful way to examine whether treatments might work differently in men or women.”

The U.S. Food and Drug Administration has also launched Snapshots, a program that shows whether there were any differences in benefits and side effects among men and women for drugs approved since 2015.

Are female doctors the answer?

Women may wonder if they would fare better when seen by female doctors, and there’s some evidence it’s true. A study published last year found women were more likely to survive a heart attack when they were treated by a female emergency room physician than a male.

“You have highly trained experts with life or death on the line, and yet the gender match between the physician and the patient seems to matter a great deal," said co-author Seth Carnahan, an associate professor of strategy at Washington University in St. Louis.

Another recent study found all patients, men and women, had lower mortality rates and were less likely to have to return to the hospital for more treatment when they were cared for by female doctors.

One of the trends McGregor has seen is that male providers tend to think female patients are overly expressing their pain, so they may "ratchet the volume down" on their complaints.

"Women patients will then say, 'I feel like I'm not being heard. Let me try to express it even more,'" McGregor noted. "So there can be a battle of the genders in that way."

But the experts were split on whether choosing a female doctor was always the answer.

“Women doctors are more aware of the differences because they’re women and they’ve had to access health care themselves and they can see the deficiencies,” Werbinski said.

But Templeton noted both men and women attend the same medical schools and have the same lack of education in this area.

“We have a long way to go to make sure that all health care professionals, whether male or female, are aware of the differences,” she said.

Placing hope in millennial doctors

One way to reach doctors who are already practicing is through continuing medical education. The profession requires lifelong learning, so doctors must regularly take courses to keep their licenses.

Merz and her colleagues have been pushing the local organizers of CME courses in her area to require “gender competence” — or include instruction on how sex and gender affect health and disease. If their efforts are successful, they’ll expand them to the state and then possibly the national level, she said.

Meanwhile, the Office of Research on Women’s Health at the National Institutes of Health is launching a new online course on this topic this summer. Health professionals can get continuing education credits for taking the class, Clayton said. Hundreds have already taken a previous version of the course.

Still, activists doubt physicians who have been practicing for decades will change very much, so some are placing their hopes in younger doctors.

“We’ll really be dependent on this upcoming generation of millennials who are going through medical school and medical training now. I would be optimistic that they will do better,” Merz said. “They’re growing up to be less sexist, less racist” and score better on an implicit bias test.

A 2015 survey of U.S. medical students found 96% strongly agreed that sex and gender medicine would help them to care for patients better and 94% said it should be included as a part of the medical school curriculum.

“I think the millennial generation will be asking [about the differences] more because they’re more aware of the gender spectrum and more aware of the science of sex as a biological variable,” Jenkins added. “It’s not just what they’re hearing in the classroom; it’s what they’re hearing in society.”

The doctors fighting to change the system want women to know it will take much more effort and time, but the momentum is building.

“I’m very hopeful. In my 20 years, I’ve seen a huge change on almost every landscape. But there’s still work to do,” Jenkins said.