‘These mistakes cost lives’: The medical bias that affects half of Australia

Primary school teacher Nikki Purtill knew something was wrong when, in the middle of teaching a class, she was overcome with a migraine so severe she wasn’t able to use her phone to call for help.

Her vision went blotchy. She couldn’t walk. There was an intense pain in her head and a whooshing sound in her ears.

But when the 25-year-old spoke to a GP, the advice was dismissive and unhelpful. She says the doctor diagnosed her with “COVID stress” and recommended she lock herself in a dark room when she felt a migraine coming on.

That consultation was one of more than 10 times Purtill attended the same GP clinic over an 11-month period, seeking help for worsening headaches and other worrying symptoms that started escalating around February 2020.

The doctors referred her to a psychologist and offered her headache medications but repeatedly declined to send her for a brain scan.

“I kept getting told that I was young and fit and healthy because I was always at the gym, or always out walking … and I ate well and all those things.”

When Purtill got the correct diagnosis, she was on the brink of death.

Purtill’s story is being shared to launch an investigative series by The Age and The Sydney Morning Herald into medical misogyny.

This phenomenon is rooted in a long history of failures to study and understand female bodies. Women report that their pain has been dismissed or misdiagnosed, while some doctors say the Medicare system gives them insufficient time and funding to manage complex women’s healthcare issues.

The consequences can be fatal. Women admitted to hospitals with serious heart attacks were half as likely to receive necessary tests and treatments and died at twice the rate of men six months after discharge, according to a 2018 study by the University of Sydney.

Historically, women have been discouraged from participating in clinical trials and are more likely to be misdiagnosed or diagnosed late for various health issues. It takes an average of six to eight years for women to get a diagnosis for endometriosis, according to the Australian Institute of Health and Welfare.

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Widespread bias

A recent survey of 3000 Australian women, caregivers and experts found two-thirds had experienced gender bias in the healthcare system.

The survey was part of a push by governments and from within the healthcare sector to reckon with medical misogyny.

In January last year, Australia’s Assistant Health Minister Ged Kearney convened the National Women’s Health Advisory Council to advise the government on how to update the National Women’s Health Strategy to acknowledge medical misogyny and incorporate steps to address it within the strategy.

“I think we’re trying to teach a whole new generation that … we are not just small men and we’ve always been treated as just that,” Kearney said.

Kearney’s interest is a mix of personal and professional.

When she was appointed to the ministry in 2022, she had a number of doctors, nurses and academics approach her about gender bias in healthcare.

About the same time, her cousin Resa died. As Kearney tells it, Resa went to an emergency department in Melbourne complaining of numbness and painful tingling from the waist down, only to be sent home with Panadol and told to see her GP.

Resa, 60, died alone in her apartment that night. She had a ruptured abdominal aortic aneurysm.

Kearney hasn’t been able to shake the thought that if Resa had been a man she would have been treated differently.

“It was such a bolt of lightning … I was so shocked by her death, and the fact that they didn’t even really examine her.”

Kearney says the women’s health council will undertake an audit of the Medicare rebate system next year to investigate why rebates are higher for procedures for men, such as scrotal ultrasounds, than they are for procedures for women, such as internal ultrasounds.

She says medical professionals have been supportive of initiatives aimed at addressing medical misogyny.

But, Kearney says, “when you challenge things like well-established guidelines, there’s always going to be pushback … In fact, one doctor, a very senior doctor, said, ‘We can’t have guidelines for every minority group.’”

‘I would not have chosen this’

A tragic example of how the consequences of the lack of research into women’s health can be deadly is Sydney woman Julie Luezzi, who died from a form of cancer linked to her textured breast implant.

In 2002 Luezzi had implant surgery at age 40 – she was self-conscious about being flat-chested, and the procedure was popular among her friends.

In April 2013, she was diagnosed with breast-implant associated anaplastic (BIA) large cell lymphoma (ALCL).

Luezzi described her misplaced shame, the pain and terrifying unknowns of her lymphoma in a letter three months before she died.

“I am struggling to keep up with all that is happening to me,” she wrote. “I don’t really understand what it all means.”

Neither did the medical profession. Despite the first cases of this type of cancer being observed more than a decade previously, it was only in the three years before Luezzi died that robust research and data collection shed light on the extent of the problem.

Just months after her death, the medical watchdog recalled eight types of “macro” and “micro” textured implants, while their manufacturers addressed “a number of safety and performance concerns”.

The crackdown affected all implants and breast tissue expanders, with the Therapeutic Goods Administration (TGA) imposing strict conditions across the implant market.

Luezzi is one of five women in Australia and New Zealand who have died of the breast-implant associated ALCL, and there were 63 confirmed deaths worldwide.

Luezzi never wanted her two sons, Paul and Ross, to know what killed her. “It was her dying wish,” Julie’s sister, Donna Ohlsen, said. She eventually told them the truth five years later.

“In her mind, she died of her own vanity,” Ohlsen said. “But that wasn’t it at all.

“She was the most amazing woman. She was stunning, had a big heart, very stubborn, and a real larrikin. What she went through … it was just horrific.”

In the months before she died, Luezzi wrote: “I know if we had all the information that is available now [my doctor] and I would not have chosen this implant”.

Gaslit, dismissed and ignored

This year the Victorian government launched an inquiry into women’s pain, with the final report to be released early next year.

A NSW Birth Trauma inquiry received more than 4000 submissions, resulting in 43 recommendations in May.

Professor Sue Matthews, a former nurse and chief executive at the Royal Women’s Hospital in Melbourne, says large numbers of women feel dismissed and not heard when seeking healthcare, and “clearly people in all areas of the public think women are ‘hysterical’“.

She described the more than 13,000 testimonies to the pain inquiry as heart-wrenching. Common experiences included feeling gaslit, being dismissed by doctors or being told pain was in their mind.

So entrenched is gender bias in research that 80 per cent of pain studies are conducted on men or male mice despite women representing the vast majority of chronic pain sufferers.

Dr Anita Munoz, chair of Royal Australian College of General Practitioners Victoria (RACGP), said she was aware some GPs were criticised for their treatment of female patients. But she argues both doctors and patients bear the brunt of an outdated funding system in which a woman may attend with up to six problems to discuss in the insufficient time (15-minutes) for which standard appointments are rebated.

“I acknowledge there are women who have had experiences of not being believed about their pain, and it’s very important to be aware women report difficulties,” she says.

“But I would be reluctant to say it’s a GP issue … My profession is singled out as the lowest-hanging fruit – but we acknowledge women have been poorly understood and that has occurred.”

Research funding bias

Gender bias in research funding was also evident, says Matthews, a member of the federal government’s national women’s health advisory committee.

“Five times more funding goes into research into male erectile dysfunction – which affects 19 per cent of men – than it does into premenstrual syndrome, which affects 90 per cent of women,” she says.

In April, a study by four health academics from James Cook University found there may be significant consequences for women’s health due to no fixed or explicit requirement to include women’s health in Australian medical school curricula, and because textbooks do not account for sex and gender differences.

“Important sex and gender differences in medicine are not reflected,” says the study, published in the journal Women’s Health Reports.

New Medicare item numbers introduced to cover longer gynaecological appointments for issues including endometriosis, polycystic ovary syndrome and complex pelvic pain were “a good step in the right direction”, said obstetrician Marilla Druitt. But significant investment in education and training about women’s health was still needed.

“Nobody goes to work wanting to do a bad job,” said Druitt. But systemic issues, such as Medicare rebates that are higher for men’s gendered health procedures versus women’s, endure.

Still, Druitt says she has very mixed emotions about use of the term “medical misogyny”, which has entered discussions about women’s experience of the health system.

“I get the point that a lot of people will feel it was particularly anti-women, the bad things that happened [to them], but I’m just thinking about all the gorgeous male physicians I work with,” she said.

“One of the male, white doctors almost apologised for being a male, white doctor. I just thought, ‘here you are, trying to do your absolute best for the women in your community; I don’t feel like you need to apologise’.”

Over-represented in medical negligence cases

Bridie Walsh, a practice leader in medical law with law firm Slater and Gordon, has observed a trend in dismissive attitudes towards women with abdominal pain, including the misdiagnosis of women with ectopic pregnancies.

“You’ve got someone who’s got an ectopic pregnancy and she’s gone to the hospital saying, ‘I’m in pain … I’m lying on the bathroom tiles to get some reprieve’” – and they’re saying, ‘No, you’re just pregnant’. In fact, her [fallopian] tube is rupturing,” Walsh says.

At least 60 per cent of Slater and Gordon medical negligence clients are female, in contrast to work injuries or transport accidents cases, in which clients are more likely to be men.

Anne Shortall, a medical negligence lawyer with Slater and Gordon, says the firm also commonly sees cases in which women with breast cancer symptoms have been initially dismissed, resulting in a delayed diagnosis.

“You can go from someone who’s very able to be treated successfully, to someone who’s got metastatic breast cancer, who passes away,” Shortall says.

It is such stories that helped to convince Victorian Health Minister Mary-Anne Thomas that the use of the term “medical misogyny” is justified.

The phenomenon starts in medical schools, where inadequate information about women’s bodies and gendered health needs are not taught.

“I learned the term ‘medical misogyny’ is used by many of the female health practitioners I’ve got to meet and know,” says Thomas. “Because they see it – and they live it.”

Lucky to survive

By the time Nikki Purtill made her final GP appointment, she had become so unwell her left leg was sometimes dragging behind her and she couldn’t shower.

She told the GP firmly, “I’m not leaving here without a slip to be scanned.”

That CT scan took place in January 2021. The radiology clinic receptionist called her afterwards in a fluster, apologising she hadn’t been able to rouse Purtill’s doctor because of the late hour.

“I’m ringing to tell you that something is wrong,” she said. “You need to present yourself to emergency immediately.”

At the hospital in Bendigo, in regional Victoria, she was ushered onto a bed, where a young female emergency doctor held her hand.

“She said, ‘You have a mass in your brain that is the size of an orange. You are going to go to Melbourne now and have surgery’.”

Doctors told her that without the surgery, Purtill would have had, at best, two weeks to live, and it was possible she could have died that night in her sleep.

Purtill suspects that if she was a 25-year-old man, she would have received a diagnosis earlier.

Now 29 and a mother, Purtill endures ongoing symptoms from the damage caused by the cyst, including nerve damage on her left side, occasional headaches and visual disturbances.

“I know everyone’s human and makes mistakes, but some mistakes can cost people their lives,” she says.

“I’m not the only person with this kind of story. I’m a lucky one because I survived. There’s lots of people that don’t get a second chance.”

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