The Health Research Council (HRC) has rejected 85 percent of applications for studies on one of New Zealand's forgotten cancers.
From 13 applications for research on ovarian cancer in the last five years, 11 were declined by the HRC.
Ovarian cancer is one of the least researched cancers in the country, but its 69 percent fatality rate means more women die from it than all other gynaecological cancers combined.
Clinical researcher from Otago University, Mak Sarwar, is calling for more funding. He says last year a group of scientists had their applications rejected.
"We are still hoping we might get it this year,'' he said.
In fact, ovarian cancer research did not receive any funding in 2018, 2019 or 2021, and the applications for 2022 are yet to be approved by the HRC.
Founder of Cure Our Ovarian Cancer Jane Ludemann said they recently surveyed 54 biomedical researchers in New Zealand and 42 percent didn't know of a single person researching ovarian cancer in the country.
"The positive take from this is that 44 percent of the respondents said they'd consider
researching ovarian cancer if there was dedicated funding," Ludemann said.
When asked why they didn't choose any of the ovarian cancer research to fund, the HRC said that with the budget available they are often only able to fund the highest-ranking proposals.
"It does not mean the other applications are not of high quality, but that the available budget can only extend to the top-ranked proposals," the council said.
Most women are diagnosed with ovarian cancer in stage three or four, which means the cancer has already spread - and it is sometimes too late.
Researching the disease is urgent to find a solution for two main problems. Unlike being able to get screened for breast cancer using mammography, there is no screening
exam to diagnose ovarian cancer at an early stage.
Treatment is also scarce. A combination of two chemotherapy is the only treatment available for all types of ovarian cancer, but it doesn't usually have the same results on the various mutations of the disease.
Hayley Smith has suffered for years. The 55-year-old caregiver used to lay on the floor on her back to find some sort of relief for her pain.
The scene was repeated for years. One week before her period, the acute abdominal pain would start, usually followed by diarrhoea, vomiting and sometimes fainting.
The mother of two teenagers went to several doctors and the diagnosis was always PMS, premenstrual syndrome or menopause.
Even though the symptoms of PMS matched with what Smith felt, she was intrigued because the doctors had already found two cysts on her ovaries over the years.
The first was removed, but the referral for an oncologist to analyse the second was declined and the cyst was left there.
"For several years I've been calling out and trying to get attention,'' Smith said.
In November 2021, Smith called her GP. Her abdomen was strangely bloated and hard to touch.
She went straight to the hospital and after a few exams she received the diagnosis of ovarian cancer - and it had already spread to her stomach, appendix and lungs.
Ovarian cancer is diagnosed via a pelvic exam, ultrasound and a CA-125 blood test, which was never required from Hayley.
"If they say no, you go and find another doctor,'' Smith said.
The caregiver had surgery to remove the tumours and finished the first phase of chemotherapy.
"They will give me a rest for four months. Put me back in the machine and see if it has come back," Smith said.
"I'll just continue with the chemotherapy until my body gets into a point that is too much."