Meet Christina. She’s a healthy 20-year-old British woman, but she’s been suffering from heavy periods and menstrual cramps that have become too painful to manage. She visits her GP, who recommends a hormonal contraceptive—like nine in 10 women in the same scenario, Christina is given the combined pill.
But the pain doesn’t stop. The pill makes her feel overwhelmed and depressed, so she stops taking it. Her doctor puts her on the progestogen-only mini pill. The pain is, he says, “just something women have to put up with.”
Over the following years, Christina visits seven different doctors to try and understand the debilitating pain she still experiences every month. She collects stool samples to test for stomach diseases and inflammatory bowel disease. She undergoes ultrasounds of her ovaries and attends a colonoscopy at a sexual health clinic. No answers.
It takes eight years for Christina to be diagnosed with endometriosis—the average length of time between a woman’s first doctor’s visit with uterine pain and this diagnosis in the UK. She’s told there’s no cure, and the only treatments are the pill (which she’s already tried) and pain relief (which she’s already taking) through to keyhole surgery or a hysterectomy to remove her womb altogether. When she asks about alternatives like lifestyle or diet changes, she feels—like 84 percent of women in a recent UK survey—like the doctors and nurses aren’t listening to her.
That experience is repeated when she gets pregnant. Although she gives birth safely, Christina is denied the level of pain relief she requests—just like more than half of women who feel they have had their pain dismissed or ignored because of their gender. That risk is heightened for women from ethnic minorities, who often report feeling unsafe during pregnancy—Black women are four times more likely to die in pregnancy and childbirth than white women in the UK.
In her late forties, Christina is misdiagnosed with depression and wrongly treated with SSRIs—just like over a third of menopausal women—when what she is actually experiencing are mood fluctuations due to the onset of perimenopause. What she needs is hormone replacement therapy. In her fifties, on her way home from work, she experiences sudden nausea and pain in her collarbone, back, and jaw, which worsens over the course of the evening.
When her partner calls an ambulance, the paramedics tell her it must be a panic attack and leave the premises. Her partner drives her to A&E the following day when the pain doesn’t improve. It takes another six hours for her heart attack to be correctly diagnosed because, according to the doctor who sees her, hers are not the typical symptoms of a heart attack. Well, they are—for women—but the “male as default” perspective means that women have a 50 percent higher chance of receiving the wrong initial diagnosis following a heart attack. In her sixties, she finds a lump in her armpit and is diagnosed with breast cancer which, she is told, can be linked to taking the hormonal contraceptive pill—the treatment she was prescribed for her endometriosis pain.
This paints a long and bleak picture, but it’s one built from thousands of collective first-person accounts women have given on podcasts, in news reports, and free text entries in the Women’s Health Strategy survey run in England in 2021.
When it comes to health care, women are second-class citizens. They have poorer access to health care, and receive incorrect or delayed diagnoses and less effective treatments than men. Despite living longer, the average woman spends nearly a quarter of her life in poor health compared with a fifth for men, according to a Public Health England report. The UK currently has the largest gender health gap in the G20, and the 12th largest globally.
At its root, the gender health gap is a research and data gap. “Historically, it stems from a patriarchal bias in society,” says Jennifer Garrison, an assistant professor at the Buck Institute for Research on Aging in California. “That’s the bottom line for all of this. This is evidenced by a major lack of funding to study female bodies, both for clinical and basic research, and if there’s no funding then scientists can’t work on those questions—that’s where we find ourselves now.”
The data is sobering: Less than 2.5 percent of publicly funded research is dedicated solely to reproductive health, despite the fact that one in three women in the UK will suffer from a reproductive or gynecological health problem. There is five times more research conducted on erectile dysfunction, which affects 19 percent of men, than on premenstrual syndrome, which affects 90 percent of women.
This is down to a number of factors. Firstly, men continue to outnumber women in most medical specialties, and in some of the largest specialties there are three times as many men as women. Secondly, according to Michelle Griffin, a women’s health expert and strategy adviser in women’s health tech, women’s health is not considered a “sexy” specialism among this gender-imbalanced research community. “It’s not seen to be interesting, dynamic, or innovative enough, not only in the startup health-tech digital space, but in much more basic medical research—literally what’s going into the textbooks,” she says. “What I got taught … at medical school 20 years ago is exactly the same as what they got taught … yesterday, which is exactly the same as what they got taught about 40 years ago. It’s not a fast-paced, evolving space, and that’s because research isn’t being done.”
Thirdly, money goes where the noise is. The past few years have signaled a step change in the conversation around menopause, with books like Maisie Hill’s Perimenopause Power and Davina McCall’s show Sex, Myths and the Menopause on Channel 4 in the UK. The British government has appointed its first Menopause Employment Champion and included menopause in the National Curriculum. Brands and celebrities have taken note, too, prompting what’s become known as the “menopause gold rush”—$50 vaginal hydrating gel from Naomi Watts’ holistic menopause brand, Stripes, anyone? And as menopause gets more openly discussed, VCs are coming to understand the huge absence of information and support—and thus the opportunity—for women during this fundamental physiological and psychological shift, the symptoms of which last four to five years on average but can go on for 14.
Menopause may be entering public consciousness (although, bewilderingly, it’s not a mandatory part of the curriculum in 41 percent of UK university medical schools), but many other areas of women’s health suffer from an information gap for both clinicians and patients. According to the Women’s Health Strategy findings, only 8 percent of respondents felt that they had access to enough information on gynecological conditions such as endometriosis and fibroids. And moving away from conditions and toward basic anatomical detail, one 2017 survey found that almost half of women don’t know what the cervix is. “They don’t know about their bodies and we’re not teaching them about their bodies,” Griffin says.
Too often, women are told their symptoms are “normal,” when what doctors should really be saying is “common.” “Rather than saying, this is what happens, how can we make that better? We’ve said, this is just what happens, this is normal.” As a consequence, women are leaving GP appointments feeling dismissed, and without having the opportunity to discuss how their symptoms are affecting their lives. “The impact has been completely lost from the conversation.”
Part of the problem is that a lot of doctors still don’t know about women’s bodies. Women have been excluded from medical trials due to a number of reasons, including an erroneous belief that their menstrual cycles might skew results, perceived risks to childbearing potential and fertility concerns among women in their twenties and thirties, and the increased cost of incorporating another population and/or subpopulations into medical studies. So to date, researchers have extrapolated that what works for men will work for women—which, to state the obvious, doesn’t always work. Take the sleeping pill zolpidem in the US, for example, which, because it’s released more slowly in women’s bodies than in men’s, still has an effect on women the morning after they take their dose. The FDA had to adjust the dosage for women after a number of high-profile driving accidents raised awareness of the problem.
So how do we close the many gender gaps in health care? The UK government’s Women’s Health Strategy sets out a number of positive ambitions and actions, including a commitment to running reproductive health experiences surveys every two years, as well as a £2 million ($2.48 million) investment in a randomized control trial on endometriosis to examine the effectiveness of surgery compared with non-surgical interventions to manage chronic pelvic pain in women. But a lot of the recommendations, though well intentioned, are vague, difficult to implement, and hard to measure.
In the meantime, a new wave of companies is filling in the gaps, invariably driven by founders’ frustration at the alarming lack of options and information available. Take The Lowdown, the world’s first contraception review, advice, and prescription platform, which aims to deliver an insightful, community-led experience of over 100 contraceptive methods—not just the standard-issue GP-prescribed pills. Or Juno Bio, the vaginal microbiome test, which states that it’s “on a mission to close the gender health gap” by giving personalized results about vaginal microbes that empower women to take control of their fertility and wider health. Or Maven Clinics, a virtual care platform that offers comprehensive care for those planning, starting, and raising a family, with a dedicated “care advocate” for all members.
The trend here is individual, patient-focused care—an acknowledgement that every human body is different and that treatments need to reflect that. In a stretched public health service, within which many aspects of women’s health are underfunded, under-researched, and poorly understood, this personalized approach gets lost.
If the gender health gap is a research and data gap—one rooted in the systemic and prolonged deprioritization of women’s health—then this historic absence is a huge problem. Without data, we’re operating blindly. And if we can fix only what we can see, then using AI to create the data we lack could be an ingenious bridge across the health gap. AI, although potentially problematic, could help empower people who “haven’t had power before,” said MIT researcher Irene Chen on a recent episode of Caroline Criado Perez’s Visible Women podcast.
Chen, for instance, worked on a research project that trained algorithms on radiology reports to predict intimate partner violence and injury an average of three years before entry into a violence prevention program. And researchers at Columbia University are using the scant data on endometriosis to power a machine learning solution that allows doctors to diagnose it earlier, so that women like Christina won’t have to wait eight years for a diagnosis. “Instead of using AI to replace doctors, maybe we should be using AI to fill in the gaps doctors and researchers have left open for decades,” Criado Perez says.
In the short term, though, closing the gender health gap is a question of money. “We need funding for the research,” says Garrison. “The studies we need to do are comprehensive, and there are a lot of them, but they’re not complex. I’m not saying we’re going to cure menopause or get rid of infertility tomorrow, but these studies could make huge leaps in terms of how we care for women—if we just put a little bit of money into the research side.”
This article appears in the July/August 2023 edition of WIRED UK magazine.
