Diminished, Dismissed, Misdiagnosed: When Doctors Don't Trust Women

Rana Mungin was 30-years old when she died of Covid-19 in March. A black teacher in Brooklyn with asthma and hypertension, she was twice diagnosed with having a panic attack in an ER, despite a fever and shortness of breath.

That reaction and lack of appropriate response by doctors was not a fluke. It happens frequently if you are female, especially if you’re a black woman, as several recent books about women’s health care reveal. That’s not news to women’s healthcare advocates, but perhaps now healthcare providers who may not have considered inherent problems involving diagnosing and treating women will be more enlightened.

Possibly the most important book on this issue is Doing Harm: The Truth About How Bad Medicine and Lazy Science Leave Women Dismissed, Misdiagnosed, and Sick by Maya Dusenbery. Adding to the impressive and important literature of women’s health, Dusenbery addresses two of the biggest impediments to women getting good care, the “knowledge gap” and the “trust gap.”

 The knowledge gap refers to the fact that many doctors don’t know enough about women’s bodies, their symptoms, or the diseases that affect them disproportionately. The trust gap speaks to the stereotyping of women as unreliable reporters at best, and hysterical at worst. These gaps are apt to occur more often with black women. Dusenbery’s central and necessarily repeated mantra is that women are either not trusted when they report symptoms or they are labeled crazy, malingering, or opioid- addicted.

“This book is not about a few sexist bad apples within the medical profession,” Dusenbery says in her introduction. “It is about how all health care providers, like all of us, have unconscious biases by virtue of living in a culture that holds certain stereotypes about women.”

These biases are revealed over and over again as women share their first-person horror stories of trivialization, misdiagnosis, not being believed and more, whether they suffer chronic pain, autoimmune diseases, reproductive problems, heart attacks or other life-threatening emergencies. 

Here’s one example. “I was asking for help. But my doctor said, ‘I don’t think you’re at the point where medication is an option, and it can be addictive. Keep exercising and doing yoga and maybe consider meditating. Try to get more sleep. If your symptoms persist, come back in a few months.”

Here’s another. A black woman I know was found to have multiple cysts in her body. She had gained weight and stopped menstruating. What did the doctor tell her? “You have a demanding job and a young child. I think it’s stress.” That opinion was rendered with no diagnostic workup, no referral to an endocrinologist, no curiosity or concern about what systemic problem might be causing the troubling symptoms.

Dusenbery backs up her conclusions with copious references to research studies, women’s personal stories, and other books in the women’s health canon, as she exposes “bad medicine and lazy science” in compelling and convincing ways.

“Doctors think that men have heart attacks and women have stress” speaks to the frequency with which women are told their symptoms are due to stress, a theme played over and over again in the stories women share. “It’s hard work behaving as a credible patient,” as one woman said, underscoring how often pain is deemed to be “all in your head.” 

A chapter in Dusenbery’s book called “This is Not Normal” reveals how often women must insist on having diagnostic workups. “Young women aren’t the only group of patients who frequently find their symptoms dismissed as ‘normal’ by healthcare providers. The tendency to normalize symptoms associated with women’s reproductive functions finds echoes in the way elderly patients, trans patients, and overweight patients are often treated.”

 “The Career Women’s Disease” points to the modern version of age-old myths suggesting that motherhood and work are incompatible. One 20th century “expert” on endometriosis notoriously stated that the painful condition was on the rise because of “delayed and infrequent childbearing.” The 19th century version of this myth was that if a woman exercised her brain her uterus would atrophy.

Autoimmune diseases are especially challenging for physicians who receive about five hours of lectures on this difficult topic during their entire medical education. Research has shown that women with these diseases, like with many others, see about five physicians over a period of seven years before receiving a correct diagnosis.

The frustration of not being believed or properly diagnosed is intense.  As Dusenbery puts it, “The long, frustrating search for a diagnosis is such a common theme running through the stories of women patients that many feel immense relief to finally get a diagnosis, any diagnosis. Being sick without knowing why is very stressful; being sick and told ‘nothing’s wrong,’ is more stressful still.” 

Delayed, downplayed, poorly diagnosed illnesses are not simply a medical issue. In this time of “intersectionality,” it’s important to realize that race, class, age, gender and more come into play. As one analyst put it, “if you’re not wealthy, not white, and not heterosexual, you may be receiving less than optimal care.”

That’s why Rana Mungin’s story is so sad, and why Dusenbery’s message, echoing that of other healthcare advocates, is so important. “Listen to women. Trust us when we say we’re sick. Start there, and you’ll find we have a a lot of knowledge to share.”  Books like Doing Harm go a long way in arming women for the task.

 

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Elayne Clift has been a women’s healthcare educator and advocate for over three decades. She lives in Saxtons River, Vt.  

 

 

Think the FDA is Looking Out for You? Think Again!

Back in the 1970s, when I sat on the FDA Consumer Consortium, an eclectic advocacy group comprised of organizations concerned with the health and well-being of various constituencies, I quickly learned that the FDA approval process needed watching. That was never truer than now.

Recently, as reported by the New York Times, the Food and Drug Administration went public with the fact that it couldn’t guarantee the long-term safety and efficacy – FDA’s twin mission – of a particular medical device, vaginal mesh products, that have been on the market for decades. Women were not surprised. Many of them remembered what Thalidomide and DES had done to them or their mothers, and many had experienced the failures and problems associated with breast implants.

Despite well-documented breast implant problems, an implant linked to a rare cancer is still being sold in the U.S., even though it’s banned in many other countries, because the FDA says there isn’t enough data to justify banning them. The vaginal mesh products in question, which support pelvic organs, have long been tied to life-altering injuries, according to the Times report. Eighty deaths were reported as of last year as a result of mesh complications, and over the past decade several companies have paid out $8 billion to resolve over 100,000 patient claims. Here’s what’s really shocking: Most of these medical devices were approved with almost no clinical data to support their safety.

As the Times story noted, “When trouble arises, devise makers equivocate, regulators dither, and patients seeking redress are forced into lengthy, expensive court battles.” That means that faulty or dangerous products can be on the market for years.

Vaginal mesh products were finally removed from the market in April, but the FDA has said it will not ban the breast implant linked to cancer and other forms of “breast-implant illness” because FDA regulators claim there is insufficient evidence of harm to justify pulling the product.

It’s not only women who are affected by poor FDA oversight or sheer negligence. Metal hips, implantable defibrillators, and artificial heart valves have also proven disastrous in some instances. “There have also been staples that misfired, temperature control machines that spray bacteria into open chest cavities, and robotic surgeons that slap, burn and main patients,” according to the Times story.

In every one of these cases, dubious regulatory approvals, poor post-market surveillance, and inadequate responses from regulators have caused irreversible, and avoidable, harm.

According to the International Consortium of Investigative Journalists, nearly two million injuries and over 80,000 deaths have been linked to faulty medical devices, many approved with little or no clinical testing. The FDA has continued to promised “transformative” changes to medical device regulation, but it’s ideas for improved regulation have yet to be realized, while regulation of the device approval process has generally accelerated. The head of the FDA office responsible for device regulation, Dr. Jeffrey Shuren, a former venture capitalist, is fine with that. He’s on record saying the benefits of getting innovative products to the marketplace quickly is worth the increased risks.

The FDA’s history hardly encourages hope that its regulation and oversight will improve any time soon. Its numerous scandals include a 2016 insider trading prosecution and a 2009 politicized medical device approval. A 2013 ProPublica investigation found the agency had overlooked fraudulent research and allowed potentially unsafe drugs to remain on the market.

How can such corruption be explained? First, follow the money. According to a 2018 report in Science Magazine, 40 physician advisors out of 107 who voted on FDA committees received more than $10,000 in post hoc earnings or research support from drug manufacturers whose products were approved by panels on which the physicians served. Almost half of the 40 physicians who were rewarded for their vote got more than $100,000, and six received more than $1 million.

As a blogger on http://globalnaticorruptionblog.com noted in 2017, “Corruption blooms where transparency and accountability are lacking.”

Because of that, “Instead of a regulator and a regulated industry, we now have a partnership,” Dr. Michael Carome, director of the health research group at Public Citizen, told ProPublica last year. “That relationship has tilted the FDA away from a public health perspective to an industry friendly perspective.”

So what can be done about a growing list of FDA disasters? Most advocates agree approval standards must be tightened so that loopholes can be closed, most importantly those that allow medical devices to hit the market in the absence of human testing. Post-market surveillance also needs to be fixed. It’s unbelievable that medical devices can be on the market before enough rigorous testing has occurred by manufacturers who argue that further testing of products occurs once they are being used. Finally, the revolving door that allows manufacturers and Big Pharma folks, who fund much of FDA’s mission, to work for the industry, then for the FDA, and back with industry again must be disallowed.

No patient should have to worry about medical devices, procedures or drugs being dangerously flawed or life-threatening. For those who have died when they are, the least the FDA can do is to correct course on their behalf, quickly and completely.

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Elayne Clift writes about women, health, and social justice issues from Saxtons River, Vt.