Women are being harmed and left in pain because many medical trials and guidelines ignore them. A paper published in the Medical Journal of Australia in 2019 found that across a broad range of health areas “data have been collected from men and generalised to women”.
Last week, the federal government announced the formation of a National Women’s Health Advisory Council to address medical misogyny that occurs due to a combination of social prejudice, medical ignorance and research exclusion. It can lead to catastrophic health outcomes for women.
The president of the Royal Australian College of General Practitioners, Dr Nicole Higgins, will act as a special adviser to the council. She says it is unacceptable that women with severe pelvic pain caused by endometriosis have their “symptoms repeatedly dismissed or ignored”, for example.
Australian women living with the painful and often debilitating condition have to wait an average of 6.4 years before being diagnosed and often undergo surgeries that don’t help and cause harm. “It is not good enough and change must happen now,” Higgins says.
Guardian Australia spoke with five experts to find out what areas they think the new advisory council should prioritise.
End obstetric violence
Western Sydney University midwifery professor Hannah Dahlen says childbirth must be high on the council’s agenda. She and her colleagues recently published findings from a national survey of 8,804 women that found more than 10% of those who gave birth in the past five years felt dehumanised, powerless and violated by health providers.
“They experienced psychological and emotional abuse, nonconsensual care and others were threatened and yelled at,” Dahlen says. “More alarming were the experiences of physical assault, such as forcible restraint or being held down for nonconsensual vaginal examinations.”
Dahlen says birth trauma affects about one-third of women yet it is regularly dismissed or ignored. When English is not a woman’s first language, or they are Aboriginal or a Torres Strait Islander, “they experience even higher rates of obstetric violence”.
“Postnatal care continues to be the ‘poor cousin’ of maternity care, where we leave women and their partners unsupported too early following birth with postpartum women’s health services that are patchy and hard to access,” she says. “We need this women’s advisory council – and let’s hope childbirth is finally on the agenda so all women finally get the care and respect they deserve. It is shameful in 2022 that we still must fight for what is a basic human right.”
Address ‘tragic outcomes’ for Indigenous women
The council must “urgently address institutional racism, the social and cultural determinants of health, and a greater uptake in cultural safety,” says Adjunct Prof Janine Mohamed, the CEO of Aboriginal and Torres Strait Islander health organisation the Lowitja Institute.
Aboriginal and Torres Strait Islander women are twice as likely to have cardiovascular disease and to die from coronary heart disease or stroke than non-Indigenous women. They also die 7.8 years earlier than non-Indigenous women.
“As the National Women’s Health Strategy acknowledges, Aboriginal and Torres Strait Islander needs are different – and inadequate healthcare can result in tragic outcomes,” Mohamed says.
“The intersectionality of racism and misogyny impacts the health and wellbeing of Aboriginal and Torres Strait Islander women, who experience a higher burden of disease than non-Indigenous women. It is vital that we focus on an Indigenous-led research agenda by and for our peoples, with targeted research strategies that support and grow the Aboriginal and Torres Strait Islander health workforce.”
Give women the right medications and doses
Dr Laura Wilson led a study just published in the journal Nature Communications that found women are up to 75% more likely to experience adverse reactions to prescription drugs compared with men because of different physical traits. The authors write: “A historic use of male animals in preclinical research and male participants in clinical trials has resulted in a significant bias in healthcare systems around the world.”
“Women have suffered from a historic neglect in preclinical and clinical research,” Wilson, from the Australian National University, says. “This has translated to us knowing far less about the time course of disease, severity of symptoms and efficacy of treatment in women as compared to men.”
Medical research must include sex-based analyses, she says. “That is, not only are female animals and women included in biomedical research, but researchers must present sex-specific results rather than just correcting their results for sex, for example by removing the impacts of sex-related variation in their analyses.”
She says the current approach by some researchers of “correcting” male-based results to include women by making assumptions about females has proven problematic.
“Many of the assumptions about including females in biomedical research are incorrect, for example, that the menstrual cycle will introduce additional variation in experimental settings,” she says.
“It would be very valuable for future research to consider applying ‘big data’ and meta-analysis approaches to obtain a more complete and holistic understanding of sex differences.”
Trans and gender-diverse experiences must be included
Starlady is the program manager of the Zoe Belle Gender Collective, a trans and gender-diverse-led advocacy organisation. She says there are numerous overlaps between the experiences of discrimination of cis women and trans and gender diverse people.
“This includes issues of bodily autonomy, sexual harassment, the refusal of access to healthcare, poor treatment and a lack of knowledge about our specific healthcare needs,” she says.
“In exploring the drivers of medical misogyny, understanding how rigid gender norms and stereotypes impact patient care is essential.”
A survey of Australian cancer patients found 58% of trans and gender diverse respondents said fear of mistreatment was the biggest barrier when accessing healthcare and 20% said they had been refused general healthcare. Starlady said she has experienced this as well.
“It’s frightening having to assess and develop my own safety plans before accessing emergency departments and then there’s the exhaustive labour of having to advocate for safe healthcare whilst I am experiencing a health crisis,” she says. “This whole process makes me feel my life is not as valued as others.”
Starlady also wants the role of faith in healthcare to be examined. “The same faith-based services that are causing cis women harm in regards to reproductive rights also exclude trans and gender diverse people from receiving gender-affirming surgeries.”