In 2017, at just 32 years old, Jane Ludemann was diagnosed with ovarian cancer and told she likely had five to 15 years to live. A year later, she founded New Zealand’s only dedicated ovarian cancer charity – Cure Our Ovarian Cancer. For more than three years, she has been asking the government to take action against ovarian cancer. This Wednesday (tomorrow) during Gynecological Cancer Awareness Month, the Health Select Committee will meet to consider a 145-page report by Cure Our Ovarian Cancer calling for the most significant changes in cancer diagnosis and treatment of the ovary in New Zealand history.
Ovarian cancer accounts for more than half of all gynecological cancer deaths in New Zealand. About 360 women are diagnosed each year and 250 women die. That’s seven deaths for 10 diagnoses. According to the Cure Our Ovarian Cancer report, women face significant delays in receiving a diagnosis and, once diagnosed, have far more limited treatment options than women overseas, and poor survival due to a lack of research.
For Jane, the cause is personal. She saw doctors for more than two years with symptoms and she says it wasn’t until the cancer caused emergency complications that someone took her seriously. Jane says the consequences of this have been devastating. “My cancer had just spread, a few months earlier and I would have been fine. Instead, these delays mean my chances of recovery are low and I have to rely on a handful of daily pills and monthly injections to stay alive.
Joan is not alone. Over 69 New Zealanders have shared their stories and Jane says with a few exceptions they are all heartbreaking. New Zealand has the worst emergency diagnosis rates for ovarian cancer among comparable health systems. Almost half of all women with ovarian cancer in New Zealand are diagnosed this way. Of these, 42% will die within a year, double the number of women diagnosed in primary care. But even when women are diagnosed early, their cancer has usually spread. New Zealand funds fewer treatment options than overseas, which is a problem, but Jane says the biggest problem is the lack of research funding.
Ovarian cancer ranks 9th to 12th in cancer research funding in the US, Europe and the UK. In New Zealand, it is 13th even though ovarian cancer ranks fifth among cancer deaths among women. Jane explains that the situation is so serious that her specific type of ovarian cancer (called low-grade serous) has only one full-time scientist working on it in the entire United States. Since 2000, New Zealand’s investment in ovarian cancer research has amounted to $122 per death. This is despite the fact that New Zealand spends more on road safety (which kills fewer women) than the whole world spends on ovarian cancer research each year.
This disparity in research funding means survival has changed little compared to many better-funded cancers. Today, ten-year survival for ovarian cancer is less than half of breast and prostate cancer, although prostate and ovarian cancer had similar survival in the 1970s.
“Unsurprisingly, New Zealand women feel left out and for a country with a proud history of defending women’s rights, this is unacceptable,” says Jane.
Cure Our Ovarian Cancer calls on the government to integrate education about ovarian cancer symptoms into the cervical cancer screening program, develop national guidelines for doctors and primary care nurses and fund the ultrasounds needed to make a diagnosis.
In addition, they call on the government to consider a proposal to urgently provide funding to enable New Zealand women to participate in and benefit from research to improve their survival.
Jane says, “The only thing we can’t afford is to do nothing.”
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