Ovarian cancer is the most lethal female cancer and one of the most poorly understood cancers affecting women, girls and people with ovaries. This year alone, around 1,800 Australians will be diagnosed with ovarian cancer, but only 49 per cent of these women will still be alive in five years.
The five-year survival rate for ovarian cancer today is the same as the five-year survival rate for all cancers in 1975, when the modern cancer research era began. For reference, the average five year survival for all cancers today, is above 70 per cent.
Why is ovarian cancer survival lagging so far behind? Biologically it’s a complex disease that includes more than 30 different subtypes, and the often vague symptoms mimicking benign health complaints commonly lead to misdiagnosis; however, there are more sinister reasons at play. This bleak picture of survival is also deeply rooted in a history of medical misogyny and gender bias woven into the medical system.
The key to saving lives and giving hope to women everywhere is urgently-needed cutting edge medical research. In January 2024 the McKinsey Institute reported that closing the women’s health gap could boost the global economy by $1 trillion annually. Of the ten women’s health conditions listed that would need to be addressed to achieve this, ovarian cancer was the only cancer on that list.
This Ovarian Cancer Awareness Month, experts say a better understanding of ovarian cancer presents a critical opportunity for improved outcomes.
Medical misogyny in women’s health
One of these experts is Professor Zoe Wainer, an honorary enterprise professor at the University of Melbourne, and one of the founding directors of the Centre for Sex and Gender in Health Policy at the George Institute for Global Health.
“In Australia, we have one of the best healthcare systems in the world, and we deliver high quality care, but still, we consistently see that there is a sex and a gender divide in the healthcare system that disadvantages girls and women,” says Professor Wainer, noting that sex is biological, and gender is a fluid concept that includes the LGBTIQ+ community.
“Women are almost twice as likely as men to delay or defer healthcare services due to costs, resulting in a higher disease burden.”
Speaking to the term ‘medical misogyny’, Professor Wainer also notes that research has shown that women have expressed feeling a sense of lack of safety in health care settings, as well as under-diagnosis and misdiagnosis that occurs when “women’s experience of their health and health challenges is dismissed”.
Professor Wainer points to Victoria’s Inquiry into Women’s Pain as a key example of this, where findings showed women are being told by health professionals that their pain is a psychological or personality issue.
Even further up the line of care, misogyny has been entrenched in medical research, with far-reaching impacts.
“We’ve seen the tendency to use male animal models, or they remove the ovaries of female animal models”, says Professor Wainer, which medical researchers have tended to do to “remove the impact of the estrogen cycle of hormones on the research findings”.
“But they don’t then go and test that in animals that have an estrous cycle,” she says, “so, we’ve actually just excluded 50 per cent of the population, potentially, in doing these animal studies”.
When looking at clinical trials with humans, Professor Wainer says, “historically, women were quite deliberately removed because of studies that were done in the 70s with Thalidomide, where there were significant side effects for pregnant women on the unborn foetus.”
“Only in the last 10-20 years have we started really including women again in clinical trials, but we’ve still excluded pregnant women,” she says, adding that this leaves the decision of a woman’s course of treatment on the shoulders of a doctor who doesn’t have ‘the evidence to know if the medication or treatment is safe’”.
While this medical misogyny can be deliberate, Professor Wainer says there’s also instances where it’s “unconscious”.
When Professor Wainer was a medical intern, she remembers a first-hand example of this unconscious bias while presenting a journal article from the New England Journal of Medicine that presented evidence around why women have worse outcomes with cardiac disease.
“One of the senior clinicians made the observation—which was inaccurate, of course—that it was an interesting article, but we couldn’t be expected to undertake research into all minority groups”, she says, noting that he “effectively termed a woman a minority group”.
Professor Wainer respectfully informed him that “51 per cent of the population, by definition, is not a minority group”, after which, he recognised his error, but it revealed the depth of unconscious bias.
“Some researchers may also fear re-analysing their research to include sex and gender as this may alter the results they have obtained and published, thereby potentially impacting their academic reputations.”
“On the flip side, of course, it’s a huge opportunity for them to actually go back and look at their research and strengthen it and bring that wisdom and knowledge to the clinical community for better health outcomes for men and women.”
With so much evidence available of where Australia’s healthcare system is inherently biased against women, Professor Wainer says we can translate this into meaningful outcomes for women, and understanding the differences in outcomes with men may also improve men’s health.
Despite so much progress yet to be made for research into women’s health, Professor Wainer holds hope and has “great optimism” for improved outcomes, noting that she’s seen governments and organisations collectively engaging in solving the problem in Australia.
| Government funding of ovarian cancer research The Australian government has contributed less than 1% of all medical research funding to ovarian cancer research over the last six years. Based on survivability, this is proportionally very low when compared to other cancers. See how the OCRF is supporting critical research and advocating for more funding. |
Pushing past history’s barriers in women’s health
One of the organisations striving to rewrite the story of historical barriers for women is the Ovarian Cancer Research Foundation (OCRF).
The Foundation is leading by example and urging change through advocacy and investing funds raised by the Australian community into ovarian cancer research projects that hold the greatest potential to improve the future for the greatest possible number of women and girls.
The CEO of OCRF, Ms Robin Penty, is driven by firsthand knowledge of the impact that an ovarian cancer diagnosis can have on the lives of women and their families and friends, as her grandmother passed away from the disease in her early 70’s.
Describing it as “an incredibly painful death”, Ms Penty is fighting to reverse decades of gender inequity leading the OCRF to ensure better health outcomes for the thousands of women in Australia bravely battling the most lethal gynaecological cancer.
“My nana was one of those incredibly bright women of her generation,” says Ms Penty. “She was a brilliant woman, but she was kept in a very small role as a carer and book-keeper, in a very small home. She was quite traumatised by childbirth and received no support for post-natal depression.She never had the opportunities my mum had, or that I have now, so she represents a lot to me around what has [historically] held women back.”
When it comes to progress for gender equity, particularly in women’s health, Ms Penty wants ovarian cancer patients to know: “There’s always hope and, more than that, there’s action.”
“If [you] can’t rise [one] day, or get out of bed, or are feeling distressed, just know that there are people– who not only care– but are doing something really valuable and important about [ovarian cancer research].”
At the OCRF, the team is growing awareness and momentum around the cause, with Ms Penty saying they’re about to announce the largest grant round in the organisation’s history because of their ability to raise awareness and funds at an unprecedented level, in recent times.
In 2024, OCRF distributed $2.4 million to ovarian cancer research, supporting 22 projects across the country.
“I don’t think we talk enough about investing in medical research for women’s diseases. While women’s health is becoming a focus for government – as it should be – 1 in 3 women with a gynaecological cancer will be alive in ten years’ time. So, it is woefully overlooked for funding and attention,” says Ms Penty, adding that a priority for OCRF is to be a strong voice for women in our community.
“This is at every step of the patient journey, really,” she says, noting this includes how women are treated in the GP office right through to clinical trials, post-operative care and beyond.
“There’s a growing alliance of organisations in Australia and globally that the OCRF is collaborating very closely with to address these fault lines in discovery research, care and knowledge-sharing, so these women can have a healthy vital future. These kinds of collaborations are long overdue, so now is the time.”
The Ovarian Cancer Research Foundation (OCRF) is Australia’s leading independent funder of ovarian cancer research, dedicated to transforming outcomes for the most lethal women’s cancer. In Australia, less than 50 per cent of women and girls diagnosed with ovarian cancer will survive more than five years.
The OCRF is rewriting this story and accelerating progress by increasing awareness, advocating for greater investment and equity, collaborating nationally and internationally, and strategically funding high impact medical research.
Learn more: www.ocrf.com.au