It’s Ovarian Cancer Awareness month in February, and women with the disease are sick of dying while they wait for their voices to be heard.
In New Zealand, ovarian cancer kills more women every year than melanoma or the national road toll, yet the Ministry of Health doesn’t even list it on the consumer cancer section of their website.
Last year, research showed that over a decade the survival of ovarian cancer had improved less in New Zealand than Australia and the US. A subsequent Christchurch study found survival rates over a decade for advanced ovarian cancers hadn’t improved at all.
The five-year survival for ovarian cancer is 39%, compared to 87% for breast cancer. But over the past 10 years, for every woman who dies, the Health Research Council spends three times as much on breast cancer research than on ovarian cancer research. In fact, in the past 10 years just three ovarian cancer studies have been funded (and 78% of the total research funding awarded to ovarian cancer research was due to a combined breast and ovarian cancer study – which affected less than 10% of ovarian cancers).
It’s facts like these that Ovarian Cancer support and advocacy groups are encouraging women and their families and friends to send to their local MPS, in the hope of raising awareness and generating action.
‘Cure Our Ovarian Cancer’, ‘Ovarian Cancer Awareness NZ’, ‘Talk Peach’, and the NZ Gynaecological Foundation are all advocacy groups for women with Ovarian Cancer, raising awareness and funds to help educate women and medical professionals about the disease and encouraging research into treatment options to improve survival
They believe that there are three key areas crucial for improvement, and they hope that the more people become aware, the more they were likely to be addressed at a national level.
Tash Crosby, founder of Talk Peach Gynaecological Cancer Foundation, knows she’s lucky. She’s one of only 15% of women caught at Stage One.
“Early diagnosis is key, because many women take 12 months or even longer to receive a correct diagnosis, and often by then the disease has developed into less treatable stages,” she says.
“We also know that 80% of women with ovarian cancer will be initially misdiagnosed by their doctors. Better education and improved access to testing could make a significant impact on this.
“Contrary to popular opinion, there is no screening test. A cervical smear test does not detect ovarian cancer although a combined blood test and ultrasound is a very accurate method of detecting ovarian cancer in women with symptoms. But despite the fact ovarian cancer diagnostic testing carries less risk than a mammogram; and that the cost of both tests is similar, NZ women with ovarian cancer symptoms face significant barriers to accessing the necessary tests.”
Funding of medications is another big area says Rachel Wilson, who founded the Gynaecological Cancer Foundation of New Zealand in 2007 following the death of her mother from Ovarian Cancer, and then the support network and advocacy group Ovarian Cancer Awareness.
“It’s heartening to see Pharmac agreeing to fund Olaparib for women with BRCA1/2 mutations with high-grade serous ovarian cancer. But so many other treatments that form part of the standard of care overseas for women overseas (such as Avastin) remain unfunded.
“Women shouldn’t have to choose between bankrupting their families or spending more time with them.”
Jane, whose registered charity ‘Cure Our Ovarian Cancer’ is dedicated to fundraising to support research into Low Grade Carcinoma (a type of ovarian cancer more frequently found in younger women), says the third essential area is research.
“In New Zealand we just don’t have access to clinical trials. This is particularly important for less common ovarian cancers, where women often don't have any specifically approved treatment options. Clinical trials would allow women to access new treatments specific to their cancer type.
Since 2005 Australian women have had access to 139 ovarian cancer clinical trials compared to just 22 in New Zealand. Funding dedicated gynaecological clinical trials nurses is one thing that would help increase the availability of overseas clinical trials in NZ.
“We are also asking for dedicated funding for ovarian cancer research – which has been overlooked for too long,” she notes.
“Significant improvements in survival cannot be made without advances in treatment and screening. We applaud the recent announcement of the Australian government targeted research funding – allocating an additional $20 million for ovarian cancer and $15 million for gynaecological clinical trials – and call on the New Zealand government to urgently commit $10 million for ovarian cancer specific research.
“This is just 0.7% of what the government committed in 2018 to improve road safety.”
This campaign is personal to all three women, who have first-hand experience with the disease, and who know how difficult it is to create a groundswell of activism and support, when women with ovarian cancer die so quickly.
“We are joining forces to speak up loudly on behalf of the many thousands of women who have this insidious disease and who whose lives are seriously impacted and shortened because of it,” they say.
“It’s not OK for any government to keep looking the other way when it comes to this cancer – we’re saying it’s time our voices are heard.”