One of the first things Tauranga mother Shirley Ryder said when she found out about her terminal cancer diagnosis was: “Who’s going to look after my children?”
The 59-year-old was diagnosed with stage 4 ovarian cancer in 2017. She says the worst part was telling her children, who were then teenagers.
But Ryder says she is now facing “the end of the road” unless she raises $66,000 – what she would need to cover the estimated cost of her first year’s treatment with life-prolonging drug Avastin, which is not funded in New Zealand.
She said in her view, medicine-funding agency Pharmac should publicly fund Avastin. She also recommended people get health insurance - which Ryder understood would have paid for Avastin if she had it.
“I know [insurance] is expensive but it’s not as expensive as getting cancer and then you can’t afford $66,000.
“We insure our car, our houses … but we don’t insure ourselves. I so should have done that.”
Ryder said her symptoms included “sharp” pain when she inhaled, difficulty eating and getting a bigger stomach despite exercising a lot.
It was soon discovered this was because she was “full of fluid”. She said doctors drained the malignant fluid from her lungs and she was subsequently diagnosed with ovarian cancer.
Ryder said the worst part about it was telling her two teenage children – her daughter was “bawling her eyes out” and her son was in “shock”.
Ryder said she underwent chemotherapy, which had worked “well” – giving her six years. She also had surgery.
Ryder said she had since become allergic to chemotherapy and needed an alternative treatment.
“This is the end of the road unless I get Avastin.”
Ryder said she wanted to take Avastin so she could spend more time with her now 23-year-old son and 24-year-old daughter.
The singer and songwriter also hoped to release a song about ovarian cancer called My Irish Eyes. She hoped it would raise awareness of the illness and any profits would go towards her Avastin fund.
Ryder said she did not know how long Avastin would prolong her life nor how long she would have without it.
“I’ve always had a fighting attitude and I’m just determined not to give up.”
Ryder has set up a Givealittle page to fundraise for Avastin.
“It’s not a cure but it gives my family and I more time to spend together,” it said.
Founder of Cure Our Ovarian Cancer Jane Ludemann said an application for funding of bevacizumab – branded as Avastin – was made to Pharmac in 2013.
“Ten years later we’re still waiting for a decision to be made.”
Ludemann said women with ovarian cancer in Australia tended to live longer than women with ovarian cancer in New Zealand.
“It’s a heartbreaking fact, that mostly comes down to women in Australia being able to access more funded treatments and clinical trial options.
“The inequity issues in New Zealand are huge. How long you live with ovarian cancer shouldn’t depend on your ability to pay for treatments.”
Avastin on options list - Pharmac
Pharmac pharmaceuticals director Geraldine MacGibbon said the application for bevacizumab had been further assessed and was re-ranked on its options for investment list in September following a recommendation from clinical advisers.
“As with all of the applications on our options for investment list, this is one we would really like to fund. We would love to be able to fund every medicine for every condition but unfortunately, that’s not possible.
“Every dollar we get in the pharmaceutical budget we spend on as many products as we can to achieve the best health outcomes for New Zealanders.”
MacGibbon said she could not give a definitive timeframe for if, or when, funding decisions would be made for this application, as the relative priority of funding applications could change over time.
Factors included relative health benefits, available evidence and funding. negotiations with suppliers, and the status of other funding applications.
“We understand that people have high expectations about having access to medicines for cancer. Our teams work really hard to make more medicines available to New Zealanders.”
Ovarian cancer common 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
Source: Cure Our Ovarian Cancer
Megan Wilson is a health and general news reporter for the Bay of Plenty Times and Rotorua Daily Post. She has been a journalist since 2021.