Women are habitually mistreated, misdiagnosed, and not even included in medical research. As a booming “wellness” industry lures them with fast cures, many can’t resist the temptation.
We urgently need your help. DAME reports the stories that need to be told, from perspectives that aren’t heard enough. In times of crisis it is even more critical that these voices are not overlooked, but COVID-19 has impacted our ability to keep publishing. Please support our mission by joining today to help us keep reporting.
This feature is part of our ongoing series looking at the inequities in healthcare.
Snake oil is having a renaissance. And while it’s true that for hundreds of years dubious salesmen have been riding into town on their covered wagons with mysterious concoctions claiming they have miracle cures for all that ails you, these hustlers of dubious lies are more insidious and more prevalent now than ever before. In fact, in 2017 the “wellness” industry had a global worth of $4.2 trillion—a number that has been steadily growing every year and now represents 5.3 percent of all global economic output. It’s a staggering number. What it represents for those that actually care about health and want to use scientific evidence to fight disease is essentially a worldwide pandemic of people who are being fleeced into tackling real illness with fake treatments. And, perhaps worst of all, the main target of these charlatan health “experts” is women.
There are, obviously, many reasons for the growth of miracle cures and predatory medical treatments and their popularity among women. But one of the main causes is a failure of evidence-based medicine to properly study, understand, and treat women—or even to show them basic empathy. The lack of proper health care and even a basic understanding of women’s bodies has left women desperate for any possible treatment. Because why trust medical science when it ignores you and fails to treat your health seriously?
The first issue lies in quality of care. In interactions with doctors, patients, especially female patients, are often ignored or minimized when they try to talk about their health. A study in 2017, from the University of Florida in conjunction with the Mayo Clinic, which monitored conversations between 112 patients and their doctors found that, on average, the patients were only given 11 seconds to explain why they were seeking treatment before being interrupted. And that was for all patients, male and female.
Now combine that with data about how women’s health and the health of women of color, specifically, are minimized and you get an even more grim picture. Here are just a few small examples: Women’s pain is often ignored or considered an overreaction—an older study (from 1990) found that when women are in pain after heart surgery they’re more often prescribed sedatives instead of pain medication and a study in 2008 found that in emergency rooms women report abdominal pain as often as men but on average are 7 percent less likely to receive pain treatment for it and are made to wait 16 minutes longer to get painkillers. The medical community has even coined a term for the fact that women receive different treatment after experiencing a heart attack than men do—called the “Yentl Syndrome” (referencing the Barbra Streisand film, in which a woman had to pose as a man in order to gain an education), it highlights the fact that women die after heart attacks more often than men because of improper and insufficient treatment.
Add race into the mix and the medical treatment of Black women is abysmal. They’re three to four times more likely to die during childbirth than white women. They have the same rate of breast cancer as white women but their cancer is less likely to be found at an early stage and they’re more likely to die from it. And studies have shown that doctors spend even less time with Black patients, are less likely to follow-up with them after appointments, and that implicit racial bias simply leaves Black people, and Black women specifically, with a significantly lower quality of care.
Given all this, how can women be expected to trust their doctors when they’ve been failed by them at every turn? It’s not surprising they’d turn to snake oil salesman promising miracle cures for symptoms that aren’t being taken seriously by their health-care providers. “Even if the clinical advice is sound the idea of not being listened to matters. And there is evidence that women’s issues aren’t taken as seriously. Their problems aren’t being heard. That matters. Those are real problems,” says Timothy Caulfield, a professor of health and policy law at The University of Alberta, author of the book, Is Gwyneth Paltrow Wrong About Everything?: When Celebrity Culture and Science Clash and host of the Netflix show, A User’s Guide to Cheating Death. “There are systemic problems with the conventional science-based healthcare system.”
In fact, it may seem odd that in citing studies about women’s health in this story we’re going back to research from 1990 and 2008. Normally, articles that cite research tend to focus only on the most recent work. But there just isn’t a large body of work to choose from when highlighting examples of women’s health. Which leads to the second issue driving women to snake oil and pseudoscience: A failure of science to study women’s health in the first place.
When it comes to the differences between men and women, “There’s a lot we don’t know,” says Amy Miller, president and CEO of the Society for Women’s Health Research (SWHR). “We only started including women in research 15 or 20 years ago and that means a lot of generic drugs may not have been investigated in women. We don’t know if a drug isn’t as effective in a woman’s body as it is in a man’s. And then there are areas where there is nothing on the market [for women].”
According to Miller, whose organization SWHR was founded 30 years ago, at a time, she says, when women and people of color were intentionally excluded from scientific research, with the goal of lobbying the National Institute of Health to include women in clinical trials. It wasn’t until 1993 that Congress finally passed a law requiring all NIH-funded trials to include women. It may seem shocking that drug trials with government funding only started including women in the 90s, but what’s even worse is that it wasn’t until 2016 that NIH-funded research was required to use male AND female mice in their studies and to use male AND female tissue cells in their research.
What that means is, until recently, the way that drugs work in female bodies has been largely unknown—and that drugs to treat female-specific disorders have not been developed. According to Miller, for example, “There are seven sexual dysfunction drugs for men and one for women. The female one is controversial and it has a warning on its drug label that you’re not supposed to drink when you take it. That warning was put in place via a study that included 23 men and two women.”
So if research on women’s health is unreliable, and drugs to treat women’s health are nonexistent or have unknown side effects or efficacy, and doctors are barely listening to women then it’s difficult to make the argument to women that they should be avoiding treatments that aren’t scientifically proven. Because a logical response to that would be: What, exactly, has science done for me lately?
“It’s understandable that people are searching for answers in other places,” says Caulfield. “Enter the wellness industrial complex that is ready to provide unproven therapies for all of this stuff.”
After all, if women are desperate for any possible treatment, why not make money off them? It’s hard to argue with snake-oil salesmen who come riding into town with a covered wagon filled with ultra-wealthy beautiful celebrities like the Kardashians who are being paid to lie to you that their flat stomachs come from drinking tea.
In an effort to better understand these peddlers of predatory medical techniques, Caulfield has himself personally tried out many of them. “I’ve gone to a lot of different alternative practitioners: reflexologists, acupuncturists, reiki, cupping. Almost without exception, it’s been a positive experience. Someone is listening to your problems. With traditional healthcare, it’s always a pretty miserable experience.”
Additionally, he says, there’s a huge power in personal anecdotes—especially from celebrities that have bodies we wish we had and glamorous lives we wish we could live. “You are seeing pop culture embrace this noise. It’s having an impact,” he says. “One study showed people who are attracted to this stuff—who believe in conspiracy theories—are more suspicious of institutions, but those individuals are the incubators of the ‘woo’ and they create this rhetoric that infects a broader audience. I hear it all the time too. People come up to me and say: ‘I agree with everything you said but the one thing I do is the Keto diet or fasting or take a supplement and this works.’ The power of the testimonial really plays big in this area.”
In a lot of cases, he says, the anecdotal evidence is a “causal illusion. They go on the Keto diet and lose weight all of a sudden it’s magical, Caulfield says. “That’s what happened with gluten. [But in reality] it’s that you’re now paying attention to your diet. The causal illusion is part of pseudoscience.”
Social media, and our digital lives, he says are also deeply to blame for the spread of these lies. “The erosion of critical thinking,” he says, is allowing “the spread of misinformation. In a liberal democracy we need informed thinkers. We need people that can discern the sense from the nonsense.” And this is certainly something that American society is currently lacking.
But if this placebo effect appears to work, then what’s the harm? At least people are feeling relief? First, he says, these predatory treatments are based on deception. “At some level it’s lying to people. I think that’s unethical. You can’t’ deceive the public even for the good of the public.” And he also points out that once you’re prone to thinking this way you become susceptible to versions of this that are dangerous. Stem cell therapy, for example, offering scientifically unproven treatments by dubious clinics have led to tumor growth and blindness. Even more dangerous, this type of rhetoric has led to crowdfunding campaigns for alternative cancer treatments—last year a study in The Lancet found there were 200 GoFundMe campaigns that raised more than $1.4 million in funding for homeopathic cancer treatments (researchers discovered that at the time of their search at least 28 percent of those seeking “treatment” had died). And certainly this lack of confidence in medical science has contributed to the growth of the anti-vaccination movement that has led to dangerous outbreaks of deadly diseases across the country.
“It invites magical thinking and it invites doubts about science. In creating that ethos it makes it easier to believe antivax or that homeopathy works,” Caulfield says. Spurning proven science in favor of remedies that can ultimately lead to death “depends on an acceptance of magical thinking.”
Hearing all of this, it’s hard not to feel a little bit hopeless. The misinformation machine feels like an unclimbable mountain. But there are some indications that we might be at the very start of a turning tide. First, according to SWHR’s Miller, in 2018, 50 percent of all clinical trial participants were women (though she notes that number might be skewed a bit by new female-specific drugs coming on to the market, which is also a sign of hope). Miller also notes that the gender disparity in those groups that make decisions about medical research is changing. According to the American Association of Medical Colleges, in the 1960s only 10 percent of medical school graduates were women. But that number has been steadily climbing. By 1990 that number was about 35 percent and today it’s about 50 percent.
“In 30 years, women will be leading medical societies and professional associations—they’ll be lead researchers and we’ll see change there,” she says.
Second, drug companies are starting to recognize the purchasing power of female patients. For the first time ever there is a drug on the market to treat endometriosis and one to treat postpartum depression. “Manufacturers now see there’s untapped potential in the women’s health market,” says Miller.
Additionally, says Caulfield, the public knowledge around the dangers of spreading misinformation is growing. “Sometimes it does feel hopeless. But I do think there are some glimmers of hope,” he says, noting that this year the World Health Organization declared misinformation about vaccines to be one of the top threats to global health. “The social networks at least recognize their role. Their steps are just baby steps, but the fact they’re recognizing it is good. People know the spread of misinformation is a huge social problem.”
Meanwhile, the FDA is starting to crack down on stem cell clinics and has begun the process of regulating some dietary supplements. “It’s an ongoing battle,” says Caulfield. However, he notes that government interaction alone is not enough. “It’s not going to be solved by one regulatory tool.”
In the end, more than anything, the change will likely come from social pressure. Organizations like SWHR and community demands to increase research on women’s health issues and the quality of medical care for women will create change. Women demanding that their doctors listen to them—or leaving doctors that don’t listen for those that do (if they have the privilege to choose their medical provider). The influx of women into the health industry to promote a better understanding of the differences between women’s and men’s health. And more then anything, if social acceptance is what allows magical thinking to continue, then the opposite is essential. A social stand taken against misinformation and a decision to publicly speak up against anecdotal evidence and placebos combined with a demand for critical thinking could be the best solution of all.
We urgently need your help!
Covid-19 has dramatically impacted our ability to keep publishing. DAME is 100% reader funded and without additional support, we can’t keep publishing. Become a member at DAME today to help us continue reporting and shining a light on the stories that need to be told, from perspectives that aren’t heard enough. Every dollar we receive from readers goes directly into funding our journalism.
Please become a member today!
(If you liked this article and just want to make a one-time donation, you can do that here)