In 2017 at just 32 years old Jane Ludemann was diagnosed with ovarian cancer and told she likely had five to 15 years left to live. A year later she founded the only dedicated ovarian cancer charity in New Zealand - Cure Our Ovarian Cancer. For over three years she’s been calling for the government to act on ovarian cancer. This Wednesday (tomorrow) during Gynaecological Cancer Awareness Month, the Health Select Committee will meet to consider a 145-page report authored by Cure Our Ovarian Cancer calling for the most significant changes to ovarian cancer diagnosis and treatment in New Zealand’s history.

Ovarian cancer accounts for more than half of all gynaecological cancer deaths in New Zealand. Approximately 360 women are diagnosed every year and 250 women die. That’s seven deaths for every 10 diagnoses. According to the report by Cure Our Ovarian Cancer, women face significant delays in receiving a diagnosis and once diagnosed have much 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 over two years with symptoms and she says it was only when the cancer caused emergency complications that anyone took her seriously. Jane says the consequences of this have been devastating. “My cancer had only just spread, a few months earlier and I would have been okay. Instead those delays mean my chance of cure is low and I have to rely on a handful of daily pills and monthly injections to stay alive.”

Jane is not alone. Over 69 New Zealanders have shared their stories and Jane says with few exceptions they are all heart breaking. New Zealand has the worst ovarian cancer emergency diagnosis rates of comparable health systems. Almost half of all women with ovarian cancer in New Zealand are diagnosed this way. Of those 42% will be dead within the year - double that of women diagnosed through primary care. But even when women are diagnosed promptly, their cancer has usually spread. New Zealand funds less treatment options than overseas which is an issue but Jane says the most significant problem is the lack of research funding.

Ovarian cancer ranks 9th to 12th for cancer research funding across the United States, Europe and the United Kingdom. In New Zealand it’s 13th even though ovarian cancer ranks fifth for female cancer deaths. Jane explains that the situation is so bad that her specific type of ovarian cancer (called low-grade serous) has just one full time scientist working on it in the whole of the United States. Since 2000, New Zealand’s ovarian cancer research investment works out to $122 per death. This is despite New Zealand spending more on road safety (which kills less women) than the entire world spends on ovarian cancer research each year.

This research funding disparity means the survival has changed little relative to many better funded cancers. Today ten-year ovarian cancer survival is less than half breast and prostate cancer, despite prostate and ovarian cancer having similar survival in the 1970s.

“Unsurprisingly New Zealand women feel forgotten and for a country that has a proud history of upholding women’s rights that’s unacceptable”, says Jane.

Cure Our Ovarian Cancer is calling on the government to incorporate ovarian cancer symptoms education into the cervical cancer screening program, develop national guidelines for primary care doctors and nurses and to resource the necessary ultrasounds required to make a diagnosis.

In addition they are requesting the government consider a proposal to urgently provide funding to allow New Zealand women to participate in and benefit from research to improve their survival.

Jane says, “the only thing we can’t afford to do is nothing”.

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