The Gender Research Gap: Why Being Your Own Health Advocate is Feminism 2.0
You've probably heard the phrase “be your own advocate” in contexts like putting your hand up for promotion.
But it's not just the workplace where you should feel empowered to follow this advice. It's also true for another massive, important area of your life: your health.
There's one big reason for this, which involves a thing that affects you individually as well as the entire global female population. And that thing is called: the gender research gap.
What is the Gender Research Gap?
There’s a long and troubling tradition of ignoring gender when it comes to health research, with women historically excluded from toxicology or biomedical research.
In 2014, researchers at the Brigham and Women’s Hospital in Boston chronicled the exclusion of women from health research and its impact on women’s health:
"The science that informs medicine – including the prevention, diagnosis, and treatment of disease – routinely fails to consider the crucial impact of sex and gender. This happens in the earliest stages of research, when females are excluded from animal and human studies or the sex of the animals isn’t stated in the published results. Once clinical trials begin, researchers frequently do not enroll adequate numbers of women or, when they do, fail to analyze or report data separately by sex. This hampers our ability to identify important differences that could benefit the health of all."
Why Does the Gap Exist?
Caroline Criado-Perez's book Invisible Women: Exposing Data Bias in a World Designed for Men shows us how we are systematically ignoring half the population thanks to the world being designed for “default male.”
Perez highlights the main reason for the lack of testing on women across all areas, including medical research, is that:
“Female bodies (both human and animal variety) are, it is argued, too complex, too variable, too costly to be tested on. Integrating sex and gender into research is simply “burdensome.”
In a nutshell, women’s bodies are considered more finicky than men’s.
Even where there are trials conducted on women, the subjects are often only tested in the phase of their menstrual cycles when hormone levels are their lowest - in other words, one could posit, when they are most similar to men. The goal is to minimize any wrinkles in the data that may occur due to fluctuations of female sex hormones. Considering the cost of clinical trials (and, in a commercial pharmaceutical setting, the in-built bias to reach a desired outcome), you can see why scientists would be highly motivated to keep a “clean” sample of participants.
However, these fluctuations are precisely why it’s essential to include more women in clinical trials (including those at every stage of menstrual cycles and those using hormonal birth control) — because that's how our bodies actually work in the real world.
4 Reasons Why the Gender Research Gap Matters
The paucity of research into how women's bodies and immune systems respond to the world around us matters because a lack of accurate data can result in some shocking gender biases that have the potential to damage our health and our everyday lives.
1. Men and women are different at a cellular level.
Women share just 98.5% of their genetic makeup with men. As Dr. David C. Page of Yale Medical School says: "That’s 15 times greater than the difference between any two human males, who are about as genetically similar to a male chimpanzee as to a human female."
Diseases, treatments, and chemicals might affect the sexes differently, because men and women are fundamentally different at a cellular level. Researchers have found sex differences in every tissue and organ in our body, even in something as unlikely as the mechanics of our hands.
The gender research gap plays out in ways you may not see at first. For every supposed “fact” or piece of "evidence" that research gives us there’s another side of reality: that it might not be strictly applicable to or accurate regarding 51% of the population.
One example is the fact that women are 3x more likely to develop an autoimmune disease. It's not really understood why (perhaps unsurprisingly), but one theory is that females evolved a particularly fast and strong immune response to protect developing fetuses and newborn babies. Our immune systems are different to men's, and so it's not beyond the realms of logic to think that therefore women might respond in a different way to drugs that interact with our bodies' natural defenses.
2. Women don't metabolize drugs in the same way as men.
What’s also apparent is that different sexes have different immune responses to vaccines. Women develop higher antibody responses and have more frequent and severe reactions to vaccines. So, surely vaccines are being tested to better calculate the different responses, right? WRONG.
The underrepresentation of women in medical trials means doctors can have no idea how some medicines actually interact with the female body, because all the testing was done on men. It's best-guess and trial-by-experience that the outcome will be similar enough not to be potentially dangerous. That's fine in the short term, but what about the cumulative impact over decades?
One both amusing and horrifying example is around a hotly anticipated female Viagra pill. There was some concern that it would interact negatively with alcohol. And so, because women absorb alcohol differently than men, the pharmaceutical company decided to run one of the trials into the drug on 2 women...and 23 men. And they didn't even separate out the data. You don't have to be Marie Curie to know that's a solid fail.
It's unclear exactly how they measured success in men (we'd love to see those results), but this shines a spotlight on the fact that drug manufacturers are given very loose regulations and plenty of loopholes that can allow this kind of thing to happen.
3. Women's health needs are often dismissed.
A series of articles in Nature journal has outlined how an over-reliance on men in drug trials is "undermining patient care." And that's not just unsafe pharmacologically, it's unjust at every level. Women’s health needs are consistently taken less seriously than men’s and health concerns often get ignored or dismissed. Research has found that doctors are less likely to take women’s reports of pain seriously than men’s. In one (admittedly small) study of patients who went to the emergency room with acute abdominal pain, men waited an average of 49 minutes before being given painkillers — and women waited an average of 65 minutes.
You can argue that this is down to cultural and social conditioning that means women are less likely to speak up and be assertive, however, the researchers wrote that: "A possible explanation for the age‐related difference may be a bias among providers against treating women for pain associated with gynecologic disease, which are more common in younger women."
In other words, pain could theoretically be written off as acceptable and tolerable if it was linked to the womb.
4. Gender inequality in healthcare is causing needless deaths.
It's not just pain management that might be affected, gender bias can also be a case of life and death. The British Heart Foundation charity released a briefing stating that:
"Stark inequalities in awareness, diagnosis and treatment of heart attacks are leading to women needlessly dying every day in the UK."
BHF-funded research estimates that more than 8,200 women in England and Wales died over a ten-year period because they did not receive equal treatment to men. In part, this is because women are 50% more likely to receive a wrong initial diagnosis when they are having a heart attack, as the symptoms can manifest in a different way in women than in men and yet traditional medical training highlighted only the "typical" male presentation. It's also because women often receive poorer aftercare following a heart attack. One study showed that women in England and Wales were 2.7% less likely to be prescribed statins and 7.4% less likely to be prescribed beta blockers when leaving hospital, despite their proven benefit of lowering the risk of a subsequent heart attack or stroke.
How might this affect your fertility treatment outcome?
Well, it might not directly, in the fertility clinic. But it could indirectly, cumulatively, each day of your life.
We already know that hormone disrupting chemicals that are dumped into just about everything we touch, eat and lather on our bodies are, as one article in the journal Fertility & Sterility put it "the 21st century's plague for reproductive health."
What the gender research gap suggests is that these chemicals might be even more damaging to female fertility than is assumed from the data.
Most chemical safety testing is conducted on, as Criado-Perez points out, a so-called “Reference Man.” That’s to say, a 154 lb. (70kg) Caucasian male between the ages of 25 and 30. This "Reference Man" outlines the profile of most test subjects included in chemical and pharmaceutical trials to test for safety and effectiveness. This strategy is great for chemical and pharmaceutical companies because it often equates to "cleaner" data. I.e. results that aren't skewed by the pesky hormonal fluctuations a woman experiences each month.
But, as you may have guessed, this is problematic because a woman's immune system and hormones are different, which can play a role in how chemicals are absorbed and impacted on the body. As with other women, you are also likely to be physically smaller and have thinner skin than a man, both of which can lower the level of toxins you can be safely exposed to. Not only that, but chemicals can accumulate in body fat, which, yep, women also tend to have more of!
As the journal author puts it:
"Modern lifestyles result in ubiquitous daily exposures to a combination of environmental factors and mixtures of EDCs that can accumulate in our tissues and fluids. Indeed, over the past 30 years, research in reproductive environmental health has identified a myriad of environmental substances associated with disease, such as pesticides (e.g., DDT, DDE), herbicides (e.g., atrazine), plasticizers (e.g., bisphenol-A [BPA], phthalates), persistent organic pollutants (POPs), dioxin-like substances (e.g., PCBs), metalloestrogens, and organic estrogens such as isoflavones. However, whether there are safe exposure thresholds remains unclear for many of these compounds (alone or in combination)."
This means that there’s a lack of data for exactly what could potentially be environmental causes of the noticeable rise of infertility around the globe, not to mention diseases like breast cancer.
It makes sense that BPA, a chemical used as a plasticizer and colorant in all kinds of products, can mimic and disrupt hormones in the human body: it was literally created as a synthetic estrogen before its industrial applications became apparent. Did anyone test how that would affect reproductive hormones and fertility, and try to gauge a female-specific safe range, given estrogen is a female hormone?
Nope, seems that would be too “burdensome.”
The Bottom Line
Clinical trials of drugs, healthcare treatments, and chemicals need to be equally tested on men and women. And, more research needs to be focused on women's health issues (not to mention, LGBTQIA health).
Adding to the fact that drugs and chemicals are primarily - sometimes solely - tested on men, there’s just more funding going into researching men’s health issues across the board.
While 90% of women experience symptoms of PMS, there are roughly 5 times as many studies conducted on erectile dysfunction. In fact, some researchers say they've been turned down for grants on the basis that “PMS does not actually exist.”
Although in the US it is now mandated that women and minorities be included in any government-funded health research, there’s still a long way to go because of the incremental nature of research and the complicated cultural contexts in which many articulations of pain, disease and treatment exist. For some, PMS is an area worthy of funded exploration, while others view it as a natural discomfort to be borne or something that's all in our heads. (Unlike erectile dysfunction, of course...)
Another prime example is endometriosis - a chronic condition that most people now have only just started to hear about - despite an estimated 1 in 10 women around the world struggling with it. Delays in diagnosis are extremely common, and symptoms of the disease can seriously affect women's working, educational, social, family and romantic lives. The economic burden of the disease alone is huge (mostly thanks to lost productivity) but research has ignored endometriosis for decades.
And then there’s the fact that massive issues in women’s health like birth control and abortion are increasingly politicized — making it even harder for some researchers to access funding.
Being Your Own Advocate
The irony of the long fought movement for equality is that now, in a health context, women are fighting to be treated differently in order... to be treated equally.
The takeaway here is to be aware that there aren’t as many guardian angels watching over your chemical exposure as you might hope and assume. But, you have every right to be your own advocate when it comes to your health.
Here's some ways you can do that:
Read and educate yourself further on this topic (Invisible Women is a great place to start!)
Find the right doctor and medical team.
Consider yourself a (junior) partner in your care. Go prepared, ask questions and communicate your wishes.
Switch to non-toxic personal care and home products, to minimize your exposure to endocrine disrupting chemicals that could impact your reproductive health.
Contact personal care and pharmaceutical brands you use and ask them if their ingredients have been tested on women specifically. Customer advocacy works, but it needs critical mass.
In the context of health, which includes everything from drug and chemical testing to research on various diseases, women have too long been shuffled into the shadows.
“Until and unless we arrive at an appreciation of how males and females read their genomes differently," says Yale's Dr. Page. "We will continue to be surprised every time we encounter a sex difference in disease incidence, severity, or response to therapy. And I think we have to do something about that.”