By Patrick McTague.
Edited by Jessica Sutton.
Note: This article refers primarily to the exclusion of cisgender women from medical data. We note that exclusion of transgender people and non-binary people is even more pronounced.
Much of this article was researched from the book Invisible Women: Exposing data bias in a world designed for men by Caroline Criado Perez. I recommend that absolutely everybody read this book and I thank her for all the hard work she has done in this field.
“For much of documented history, women have been excluded from medical and science knowledge production, so essentially we’ve ended up with a healthcare system, among other things in society, that has been made by men for men.”
-Dr Kate Young
Historically, medical science has framed women as “different”. But not for rational reasons. Medical diagrams of women were purposefully drawn to reduce brain size, and over-emphasise hip width, to support the argument that women were intellectually diminished reproductive machines. Medical problems surfacing in women were commonly linked to psychological problems, rather than treated as the physical disorders that they were. To be a woman in pain, was to be both stupid and crazy. Things have not changed as much as they should have. This is the “gender gap in health”.
When women are left out of non-sex specific medical studies, whether it be for the development of new medicines or for testing of how diseases present, the implication is that those conducting the studies do not care about women’s health. They are not concerned with making the lives of women easier, happier, healthier. By ignorance or by design, they only want to help men. And studies show that this is the case for most of the medical industry.
The two major issues facing women in the development of medicines are their exclusion from trials and that even when they are included, the results are often not reported based on sex. This leads to a lack of information about the effectiveness of new drugs on women. A 2018 research paper studying gender differences in clinical trials for drugs that are “prescribed frequently” found that only 22% of participants in phase one trials were women.
Even more interestingly, the all-male authors of this paper concluded that this wasn’t an issue because phase two and three trials included women participants at 48% and 49% respectively. However, to make it past the phase one stage, drugs need to be shown as ‘effective’. So, drugs which would benefit women but not men would not have a fair chance of making it past this stage, meaning a wide new range of new treatment options go completely undiscovered. And that is a huge problem!
Not only do women not have a fair chance of obtaining treatments that benefit them, but because of this, drugs which are marketed as for “everyone” commonly simply don’t work for women. This is the second most common adverse drug reaction reported by women.
And it’s not just clinical trials where men are the main subjects. Earlier stages like animal and cell trials largely only include male subjects even though sex-differences in these stages have been consistently reported for nearly 50 years. A 2014 paper found that studies on female-prevalent diseases only studies female animals 12% of the time. In 2016 researchers found stark differences in how female and male cells respond to oestrogen (female cells were able to fight off a virus with the help of the hormone and male cells could not). And yet a 2011 study found 69% of cell studies in a cardiovascular journals used only male cells, and a 2014 analysis found that cell studies which did specify the sex of the cells used male only cells 71% of the time.
Having equal proportions of the sexes in the trial stages means that there is an equal likelihood of discovering drugs which work for either men or women or both, and women are not left out of the process of discovering new drugs that may benefit them.
So why aren’t women included in these trials, when the evidence clearly shows that you get different results when testing on men and women? The sentiment seems to be that it is simply too difficult. Women are more variable and burdensome and it’s just simpler if they are left out. This argument is not only ethically and scientifically irresponsible, it’s also just wrong. Recent studies in mice have found that males have a greater variability than females. It’s also financially incoherent. How much money has been left on the table for corporations that could have discovered treatments for wide ranges of female prevalent diseases, but didn’t include females in any of their studies? Imagine the first company to discover effective pain relief for period pain. They would make billions.
With all this evidence in favour of including women in every single step of testing and analysing results based on sex, the only explanation for why they don’t is very evident. They do not care about the health of women. Not only that but they don’t see women as a viable market.
And maybe the reason for this goes back to how women are treated in the medical industry as a whole. A 2008 study of health textbooks recommended by prestigious universities in Europe, the United States, and Canada found that male bodies were used three times more often than females to illustrate “neutral body parts”. Similar studies have shown that all across the medical training industry men are either seen as the default and women as anomalies, or the differences in their biology are completely ignored and male biology is used to represent all of human-kind.
When these are the methods used to train doctors and pharmacologists, we can’t be surprised when female-specific symptoms are seen as atypical or are completely misdiagnosed because they have been indoctrinated into thinking that the male experience is the only experience. And this thought process, this way of teaching, is killing women. Advice on diet and exercise’s effect on staying healthy, avoiding cancer, or helping with diabetes have largely been based on the results of male-specific studies. Cardiovascular disease has been the leading cause of death in US women since 1989, however, doctors often misdiagnose women having heart attacks because they typically present completely differently from men. Typical male heart attacks involve chest and left-arm pain, but women typically present with stomach pain, breathlessness, nausea, and fatigue. And even physicians themselves have stated in a 2005 study that they “did not rate themselves as effective in treating sex-tailored cardiovascular disease”.
These are just a couple of examples of the bias against women in the medical industry leading to higher fatality rates in women. For more examples, again I would recommend Invisible Women: Exposing data bias in a world designed for men by Caroline Criado Perez, chapters 10 and 11.
Last week we published the story of one woman’s experience with chronic pain and the medical industry. She was dismissed, ignored, and her pain downplayed by male doctors. She was prescribed a pill which gave her suicidal ideation. And it’s clear that this is not an anomaly, this was not “one isolated incident”; this was the typical female experience with doctors, with medication, with the world. Until women are treated as having a different bodily makeup from men, until they are studied separately, until they are taken seriously as having unique conditions, they will continue to suffer. Women’s health worldwide will be neglected, and women will continue to die needless deaths. We need our medical industry to shift its thinking, we need our governments to insist on fair treatment, testing, and research. We need our societies to listen to women when they say, “I am in pain”.
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