Of the 370 women who are diagnosed with ovarian cancer in New Zealand each year, 20 would be living longer lives if they lived in Australia. Living longer could be the difference between seeing their child start school, or not; attending a family wedding, or not; being there to financially and emotionally support their family, or not.
May 8th is World Ovarian Cancer Day and the theme is No Woman Left Behind, but unfortunately kiwi women are being left behind. We don’t have the same access to treatments, clinical trials or standardised testing as Australian women and it means that this already devastating disease has an even bigger impact on New Zealanders who receive an ovarian cancer diagnosis.
In Australia there are national guidelines that recommend that if a woman has ovarian cancer symptoms for more than four weeks then she should get tested, and that test should happen within two weeks. We repeatedly hear stories about women like Erin, who was dismissed by doctors for over a year before she received a diagnosis of stage 4 low-grade serous ovarian cancer. Of the 50 women with ovarian cancer that Cure Our Ovarian Cancer surveyed in 2021, 80% of women feel like they were treated like a hypochondriac at some stage during their diagnosis.
Erin was diagnosed with low-grade serous ovarian cancer “Throughout multiple visits I was told at 35 years of age I was too young for anything serious to be wrong, or at 85kg I was too overweight to be ill. I was told it was constipation and to change my diet, the list goes on. All I can say to anyone out there showing symptoms and knowing deep down there is something more to it, is to trust your instincts and get second opinions.”
In Australia 50% of women see their doctor within a month of experiencing symptoms, compared to just 8% of kiwi women, likely due to a lack of awareness of symptoms in New Zealand, and a fear of dismissal by their doctor. Early diagnosis is essential to be able to offer women the best treatment. To supplement this we also need to raise awareness of ovarian cancer symptoms so women can present early, and advocate for themselves.
Survival rates are another big difference between our countries. The five year survival rate in Australia is 43.2%, compared to just 36.3% in New Zealand. Aside from earlier diagnosis there are two other key factors contributing to our shortfall, access to treatments and access to cutting-edge therapies through clinical trials.
Australia has more publicly funded treatments available, treatments that should be available to women in NZ facing ovarian cancer. Debbie didn’t have any success with publicly funded treatments. She now takes bevacizumab. The first infusion cost her $13,000. The pharmaceutical company caps the cost at $25,000 so now it’s “free”. But it needs to be administered in a hospital. Since it’s not a funded drug the public system can’t administer it, so she pays $1,800 every three weeks privately. “Without it I wouldn’t be here. I don’t know how long we can afford to keep doing this, but every extra day, week, month and year with my family is precious.”
Other non-funded treatments are sometimes given to patients under a compassionate scheme by pharmaceutical companies. However the government doesn’t waive the GST on these treatments, some bills for GST and pharmacist fees rack up to over $2,000 per month.
Women in New Zealand living with ovarian cancer have less access to clinical trials compared to women in Australia. In fact Australia has nine times as many clinical trials available. Some treatments that are recommended as standard of care (the recognised best treatment) overseas are not funded in New Zealand. If we lag behind recognised standards of care we will not get access to clinical trials that compare a new drug to the internationally recognised standard of care drug.
The final issue we face is a lack of research. Since 2011, Australia’s government has invested $87.9 million into ovarian cancer research. During the same period, through the Health Research Council, New Zealand invested a total of $18,000 for ovarian cancer-specific research. The inequality is unjust and avoidable.
As part of their advocacy work Cure Our Ovarian Cancer has presented a National Ovarian Cancer Report to the Health Select Committee, including recommendations to help improve outcomes for women with ovarian cancer. Many ovarian cancer patients across NZ have shared this report with their MP’s and discussed the impact that ovarian cancer has had on their lives.
This World Ovarian Cancer Day Cure Our Ovarian Cancer encourages people across New Zealand to get to know the symptoms of ovarian cancer, and go to their GP if they experience any new or persisting symptoms for two weeks. And don’t be afraid to ask for a second opinion.
Ovarian Cancer Symptoms:
- Abdominal/pelvic pain or discomfort
- Bloating or increased abdominal size
- Bowel habit changes
- Eating less and feeling fuller
- Needing to urinate more often or urgently
- Fatigue