Most of us are familiar with the meaning of the word hysteria. We’d also probably agree that it tends to be used almost exclusively in reference to women. But why?

The word can be traced back to the Greek word for uterus, ‘hystera’. How we use it today dates back to the 17^th century, when women were thought to be driven to madness by a malfunctioning womb. Plato (a famous Greek philosopher) even took it as far as suggesting that an angry womb could wander through the body and suffocate its host. According to this school of thought, everything from menstruation to menopause was deemed a disease of the body or mind. In the words of Hippocrates (a famous Greek physician), “the womb is the origin of all diseases”, ironically, not the origin of all life!

In her book, Pain and Prejudice: A call to arms for women and their bodies, Gabrielle Jackson writes about the medicalisation, diagnosis and treatment of hysteria from the late 1600s onwards; it wasn’t until the 19^th century that the medical specialities of gynaecology, neurology and psychiatry were eventually born. Bizarrely, rather than this changing the tune on women’s health and our apparent chronic hysteria, there was very little progression in the understanding and appreciation of women’s health, rather, this just ensured sexism became rooted in science and medicine.

Even today, women’s bodies still aren’t being taken seriously. As recently as 1933, Freud (a famous Austrian neurologist) stated that ‘Throughout history, people have knocked their heads against the riddle of femininity’. It’s not until very, very recently that this norm has gone unchallenged. The consequence, writes Lynn Enright in her book, Vagina: A re-education, is that the female body is so misunderstood that misinformation still lingers and causes trouble to this day. But the more we talk about it, the more it might begin to change.

All healthcare starts with research; gathering evidence, performing studies, and running clinical trials to find out the whats and hows of biology and medicine. The issue of women’s health being neglected starts at the research stage. But how did that come about?

There’s an age-old misconception that women’s bodies really don’t differ that much from men’s. As Caroline Criado Perez states in her book Invisible Women, science has always assumed a ‘default male’ position. That is, the female body has primarily been considered simply a small version of the male body but with different reproductive functions. In fact, Aristotle (another famous  Greek philosopher) famously labelled female bodies as the ‘mutilated male’ body.

As a result, research has, as standard, been carried out on the male body, then generalised to females, intersex and trans people. Looking at existing research, we can see areas where this lies in plain sight. 70% of the people that chronic pain impacts are women. Yet 80% of the research is conducted on male bodies. Women are 50% more likely to be misdiagnosed after health failure, yet heart failure trials, generally, tend to use male participants. We could go on.

The consequences of this are dramatic, to say the least.

Some have argued that the menstrual cycle makes the female body too variable to provide trustworthy results, therefore excluding us makes running trials and analysing results easier, simpler, and cheaper. Other studies claim that the exclusion of women from clinical trials and studies is rooted in safety, due to the fact that female subjects might be, or could become, pregnant and protecting an unborn child must be the priority over including women in research. The lack of research carried out on the pregnant female body is a topic of discussion in its own right. Spoiler alert: unsurprisingly, there isn’t much of it around!

The problem stands that if women aren’t included in research, it’s no wonder we’re struggling to 1) understand the female body and how it functions, and 2) develop treatments and solutions to treat it when things go wrong.

Clinical trials and change on the cards

In the US, where a lot of medical research is conducted, female participants were first included in clinical trials in the late 1980s. It was not until 1993 that such inclusion was made mandatory. Since then, a wide range of advocacy groups and governmental agencies have been pushing for change with new guidelines and policies. 

What’s particularly positive is seeing not only women’s inclusion in clinical trials and research, but the sex-specific aggregation and analysis of data. Surprising numbers of trials that do include women have, in the past, not separated the results out according to the sex of the subject. Considering men and women’s bodies function and respond to viruses, drugs, and other stimuli so differently, ensuring the results of these trials are processed separately is critical to gathering accurate data that continues to push understanding of women’s health forward, and is crucial in determining the safe use of medication for both sexes.

Male bias in trials is one thing, but the funding of studies is another. Of course, women need to be included in studies of diseases that affect all genders, but what about conditions affecting females exclusively? This is where looking at funding becomes more important – although sadly the findings aren’t particularly encouraging just yet.

If we look at US studies on conditions that affect just one sex, the funding favours studies of male diseases three times out of four, either in that the condition affects more women and is underfunded, or it affects more men and is overfunded. This is made worse by the fact that, for female-specific conditions, much of the time there is little to no funding at all. The funding allocation per woman with diabetes (a non-sex-specific condition) is estimated to be 1500% higher than the funding allocated per woman living with endometriosis (a female-specific condition). You could argue that, surely, if this is the case, diabetes must affect more women. Frustratingly, 12% of the women in the US have diabetes, and 11% have endometriosis - so why isn’t the funding allocated to each equal?

Female-specific conditions represent a measly 4% of US biopharma R&D spending, with just two of the 37 prescription medications that received FDA approval in 2022 being for women’s health conditions. In the UK, studies looking exclusively at reproductive health made up less than 2.5% of publicly funded research (2014).

But where does the money go? A catch 22

There’s five times more research into erectile dysfunction, which affects 19% of men, than there is on PMS, which is experienced by 75% of women. One PMS researcher claims to have had grants rejected because of a view of PMS as merely a ‘product of culture and society’.

‍According to one professor of gynaecology and reproductive sciences, the fact that the main funding bodies in the UK have historically favoured research into male conditions or those affecting both sexes is a consequence of a lack of understanding of many women’s health conditions. It feels a little bit like a catch-22; no one invests in these conditions because they barely know they exist, but no one will learn more about them unless there’s sufficient funding for more research.

Funding women's health – seeds of hope

There’s reason to feel optimistic, though. While the figures are still low, relatively speaking, 2021 was a record year for women’s health funding in the US digital health start-up space. Efforts are also being made to accelerate the prioritisation of and investment in equity and female health, with the World Economic Forum heralding that a $300 million investment in women’s health research could yield a $13 billion economic return.

Before we look at the wider implications of women’s health being underfunded and under-researched, it’s worth noting exactly why studies of male bodies will never be enough in aiming to appropriately diagnose and treat health conditions affecting all genders.

Biology, hormones and all that jazz

It’s not always easy to differentiate between nature and nurture, between differences on a molecular and cellular level and between environmental and behavioural differences – but in clinical studies, biology matters. It matters in that certain conditions are far more likely to affect females than males, it matters in that female and male bodies respond differently to stimulus (from viruses to drugs), and it matters in that health risks can be more or less severe for one sex than another. As an example, a female smoker is between 20-70% more likely to develop lung cancer than a man who smokes just as much, and women are 70% more likely to suffer from depression than men. There’s clearly a difference in the way our bodies behave. 

Hormones, body fat and metabolism, among other things, impact the effect of medical treatments and the uptake of medications. Women tend to have thinner skin but a higher percentage of fat, and they have a lower metabolic rate than men. Studies have shown that Acetaminophen, an ingredient included in many pain relief drugs, is eliminated at 60% of the rate it’s eliminated by the male body. In other words, the findings from medical trials on one sex do not necessarily apply to the other, and data should always be separated according to sex.

The implications of women’s health being underfunded and under-researched are many and multi-faceted. The statistics and figures speak for themselves – and there’s no shortage of examples.

Looking at general health and the poorer outcomes for women, women are for instance seven times more likely than men to be misdiagnosed and discharged in the middle of having a heart attack, while men are 2.5 times more likely than women to be referred to a cardiologist when experiencing chest pain. Women are left waiting for much longer in A&E and are less likely to be given painkillers than men. Of the medications recalled by the US FDA between 1997 and 2000, eight out of ten posed greater risks for females.

When it comes to female conditions specifically, there are still significant research and treatment gaps. Research has shown that 80% of pregnancy-related deaths in the US are preventable. As already mentioned, getting a diagnosis for many of the common female-specific conditions like endometriosis and polycystic ovarian syndrome (PCOS) takes years. On average, it takes 12 years to get a PMDD diagnosis in the UK. Of those experiencing PMS, more than 40% don’t respond to available treatments.

Both Lynn Enright and Gabriel Jackson conclude in their books that doctors are still less likely to take women seriously when they describe their symptoms than if a man shares the same complaints. Still, women’s response to pain is all too often seen as exaggerated and hysterical.

Beyond the purely medical shortcomings, the patriarchal legacy still surrounding women’s health has contributed to a wider knowledge gap, as well as shame and stigma. When gynaecological cancer charity The Eve Appeal surveyed British women, only half were able to identify the vagina on a diagram and 65% were uncomfortable using the words ‘vagina’ and ‘vulva’ in conversation. A Plan International report on menstruation found that almost half of girls in the UK are embarrassed about their period, while 14% didn’t even know what was happening when they first started bleeding. Conditions like pelvic organ prolapse, common after childbirth and in particular after menopause, are steeped in shame and many of those who live with such conditions are too embarrassed to tell anyone about it.

Again, that catch-22: if people don’t even have the language to describe what is happening to them, or indeed if they feel too embarrassed to talk about it, there’s very little public debate to drive change, normalise our experiences, help find solutions, and put women’s health on the agenda. As the recent conversation on menopause has shown, the funding follows – at least to some extent – the wider public conversation. The lack of research, then, perpetuates the knowledge gap and stigma, which creates a culture of silence and suffering. That in turn means funding goes elsewhere, to louder issues assumed to be of greater importance.

That there’s a moral argument for turning this ship around is probably clear by now. What fewer people seem to be aware of is that we all have a lot to gain from putting women’s health on the agenda and funding it properly. Women’s maternal and reproductive health is, according to McKinsey Global Institute, a key driver in achieving the kind of gender equality that could raise global GDP by up to $28 trillion; coined the ‘power of parity’. In fact, it’s becoming a widely accepted truth that the welfare and empowerment of women are a prerequisite for the health and well-being of communities and societies globally.