“Women are in pain,” writes Gabrielle Jackson in Pain and Prejudice.
“They’re in pain with their periods, and while having sex; they have pelvic pain, migraines, headaches, joint aches, painful bladders, irritable bowels, sore lower backs… But women’s pain is all too often dismissed, their illnesses misdiagnosed or ignored.”
First published in 2019, Jackson’s book — subtitled a “call to arms for women and their bodies” — captured her frustration at how little progress had been made on the treatment of endometriosis after her own diagnosis 14 years earlier.
“I was so angry when I wrote the book,” Jackson says.
“And it was so exhausting. When you’ve got a chronic illness, sometimes full-time work is all you can do, and I was writing the book on top of my full-time job. And there were times when I really thought it wasn’t worth it.”
In the years since, Jackson has stepped back her advocacy, focusing on her “day job” as Guardian Australia’s head of multimedia while she recovers some energy.
An announcement made in the last week, however, has her feeling reinvigorated.
On Thursday, Ged Kearney, Assistant Minister for Health and Aged Care, announced that the federal government would be establishing a Women’s Health Advisory Council to tackle “medical misogyny” within healthcare systems.
The council, which Kearney will chair, brings together experts — and those with lived experience — to provide advice and recommendations to the government on all matters women’s health.
In her speech, Kearney thanked Jackson and others who have advocated for action, acknowledging that the “system is stacked against them”.
“It’s not about doctors hating women,” Kearney says.
“There’s no conspiracy in a basement somewhere. It’s just that society, the world, simply everything is built around men. And the good thing that’s happening is that we’re starting to get a small body of evidence to show what women have known for centuries.”
Stats show women at increased risk of dying
That small body of evidence is increasingly more alarming — and the discrepancies aren’t just relevant to gynaecological issues.
A recent study looking at Australian and New Zealand data showed that women are approximately 1.5 times more likely to die in ICU after heart surgery than men.
Yet studies also show that women complaining of symptoms consistent with heart disease are twice as likely to be diagnosed with mental illness compared to men with identical symptoms.
We now know that women present with different symptoms of heart-attack than men (for example being less likely to complain of chest pain), but doctors routinely recognise only those symptoms that men most commonly experience.
A 2021 study from the U.S., meanwhile, found that diseases which primarily affect women are vastly underfunded relative to disease burden, while those primarily affecting men are over funded by a ratio of 2:1.
And trans women face a raft of unique barriers to accessing appropriate health care, including inadequate training and stigma on the part of doctors and specialists.
The stats are proof of what women have been saying all along: that they face a range of “poorer health outcomes” comparative to men.
“It feels like I’ve put my shoulder up against a massive juggernaut and I’m trying to steer it in another direction,” Kearney says.
“I’m not going to pretend that life is going to be different tomorrow, but I hope this can be the start of systematic change at the policy level.”
More research, gendered guidelines needed
Dr Sarah White, CEO of Jean Hailes for Women’s Health, is one of the experts who has been invited onto the national advisory council.
She has a number of suggestions for where the council can start getting to work.
“So much medical research has studied males and then generalised those findings to females,” she says.
“As a society, none of us seems to have a problem understanding that we need paediatric research and children’s hospitals.
“We intuitively understand that small boys are not the same as men, but for some reason, we treat women as if they’re small men.”
This is an issue raised by Jackson in Pain and Prejudice. She points out that while 70 per cent of those who live with chronic pain are women, 80 per cent of pain studies are conducted on men or male mice.
This means that women are often prescribed drugs (and at dosages) that may not be appropriate for them.
“The Therapeutic Goods Administration (TGA) should not approve medicines unless there is sufficient data around quality, safety and efficacy for males and females separately,” Dr White says.
“We also need different treatment guidelines and public awareness campaigns. If you look at something like menopause, it affects 50 per cent of the population, and of those, 10 per cent will have symptoms that really impact their ability to work, live, study and play. But we still don’t have anywhere near enough research on it.”
The Labor government has undertaken some preliminary, related measures to address some of the issues raised by Dr White.
This includes the announcement that it will fund 16 dedicated Endometriosis and Pelvic Pain Clinics across the country, while in October Health Minister Mark Butler announced that the NHMRC would set targets to award equal numbers of Investigator Grants to women and men to address gendered inequities in research funding.
Kearney says this measure is one step towards addressing knowledge gaps, given women are more likely to study issues relevant to women’s health.
While White welcomes both initiatives, she says she would like to see the government go further by promising targeted funding for issues that overwhelmingly affect women and gender diverse people:
“We need to make sure there is equality of funding for conditions like endometriosis and menopause, and perhaps even more funding, to make up for injustices in the past.”
Women’s voices ‘haven’t been heard’
Tackling gender inequality in the healthcare system also requires addressing the underlying issue of how women are treated when they present to doctors.
“When we do our work as women’s health services and ask women what’s missing from medical care, time and again they say ‘we’re not being heard’,” Tricia Currie, head of the Victorian Women’s Health Council and CEO of Women’s Health Loddon Mallee, says.
“They might be speaking, they might be telling their story, but they’re not actually being heard.
“There’s unconscious bias within the health care system which is why it is important that we have structures around decision-makers that ensure governments are hearing from women, and diverse women, about not only what the issues are but what some of the potential solutions are.”
It’s an issue Dr Mariam Tokhi feels passionately about. She is a GP at Utopia, a refugee and asylum seeker health centre in Hoppers Crossing.
Tokhi has a diploma in obstetrics and gynaecology, and recently completed a qualification in narrative medicine.
“As doctors and health care workers, we get a lot of training in statistics and biosciences,” she says.
“But what I see is that when we meet people every day, we are hearing stories, and we really need to get some training and skills in how to listen, and how to show up for patients.”
Medical model needs overhaul: GP
Tokhi argues that addressing the many issues with women’s health care requires a re-think of the medical model.
“The way Medicare is set up, the way our hospitals are designed, all of those things have been done with a particular lens, and it has mostly been set up by white, wealthy men,” Tokhi says.
“With general practice, the system is set up to incentivise fast care. So GPs, especially if you’re bulk billing, make the most money if you see someone every six minutes.
“There is a penalty for spending more time with patients. And we need to question that — why is fast seen as good? Fast favours a hyper-masculine, terse and laconic form of communication.
“People who have complicated and messy stories, who are carrying trauma and struggling with their mental health, need longer to express themselves, and someone to listen.”
These issues are only amplified, she says, when women face other forms of disadvantage, including those from diverse cultural and lower socio-economic backgrounds.
She gives the example of antenatal care, and the range of ultrasounds and blood tests recommended in the first trimester of pregnancy which are not covered by Medicare.
“All of those things are really clinically useful,” she says.
“So the people I see — they take out a loan, for $400, for a blood test. And some people will argue that these are optional tests, but why are they only optional for poor people?
“And if you think going into an emergency department with heavy bleeding is hard for an articulate, wealthy person, imagine how hard it is for someone who can’t speak the language.
“In setting up this committee, we need to take an intersectional lens. Not all women’s experiences are the same, and we need to look at how all of our systems are geared to keep the status quo going.”
‘They can’t silence us anymore’
With numerous issues to address moving forward, all interviewees agreed that the council must not waste the public appetite for change on health care.
“If you look at the concept of health care being universal, there’s a groundswell of anger at the moment because we don’t have universal health care,” Currie says.
“The many existing inequities in the system are only exacerbated by the extraordinary things we’ve experienced recently, like pandemics and, particularly in our regions, natural disasters like floods.
“Moving forward, ensuring there is accountability attached to the council is really important, because it’s one thing to be principled and philosophical, but we need some accountable measures, too.”
In the meantime, Jackson and other women who have agitated for change are funnelling their anger into hope.
“We are so behind in understanding female biology that I don’t have any expectation that my life is going to dramatically change any time soon,” Jackson says.
“But the fact a government committee is acknowledging that there’s a huge knowledge gap when it comes to women’s health is so important.
“This isn’t just for cisgender women either — imagine how much better the lives of gender diverse and trans people would be if we understood the differences in male and female biology.
“It’s amazing to see everyone coming together to make a positive change about an issue that a lot of people think isn’t sexy, that they find depressing.
“We’re like, it doesn’t matter if you find us depressing. You can’t silence us anymore.”