Four cancer treatments in three years: $132,775.
Bay of Plenty mother-of-three Debbie Robins says this is what she has had to pay for drugs to prolong her life as she fights incurable ovarian cancer.
Of this, she has paid nearly $20,000 in GST and thousands more to get a drug administered privately.
Now, she is calling on the Government to remove GST on privately-funded medication or to allow it to be administered in public hospitals.
“There must be a better system ... [where] everyone can get some form of funding,” the 46-year-old said.
“What happens to people that can’t afford it? If you can’t afford it, you die.”
A spokesperson for the Minister of Finance said there were no plans to change GST and there were better ways the Government could help target people’s needs. Te Whatu Ora - Health NZ said it was responsible for delivering publicly-funded healthcare and was not usually able to subsidise the administering of privately-funded medications.
Robins shared her story with the Bay of Plenty Times to mark World Ovarian Cancer Day on Monday. About 370 women in New Zealand are diagnosed each year, according to the charity Cure Our Ovarian Cancer. Last month a Rotorua mother and daughter both with terminal ovarian cancer spoke out about their diagnoses.
Robins, who lives in Paengaroa with her husband and three children, was diagnosed with grade 3C ovarian cancer in May 2019 after discovering a hard lump near her pubic bone.
Originally, it was not picked up as cancer, but her friend - a paramedic - advised her to see a doctor again.
“I had two 9cm tumours on my ovaries.”
Robins said her symptoms included more painful periods, pain during sex, blood in her stool, stomach issues, and frequent urination.
She had three rounds of chemotherapy and then surgery in 2019, but it could not remove all the tumours.
Since July 2020, Robins said she had spent $132,775 on four non-funded drugs.
Trametinib cost her $32,000 for 15 months and Avastin was $62,225 for a year. She had Doxorubicin free for two months through an access programme her oncologist applied for, but had to pay $6000 - $3000 per month - for the drug to be administered privately, as it could not be done at a public hospital.
For the third month, Robins paid $10,000, which was the cost of the drug and having it administered.
She is currently taking Fulvestrant and Ibrance, costing $6200 every month.
She said the family had to sell a caravan and two other vehicles to help fund the treatments.
“This is my second-to-last option. My next option after this is just chemo.”
Robins said her cancer could not be cured and the treatments were to prolong her life. Her prognosis, however, “isn’t great”.
The hardest part was telling her children, aged 20, 19 and 16, about her diagnosis.
“I was supposed to tell them, but when it came to telling them, I just couldn’t. I just got upset,” she said through tears.
Robins said her family was planning a trip to Australia soon and she was “thankful” she and her husband had always made their relationship a “priority” - “because we wouldn’t have had that time”.
In response to Robins’ comments, a spokesperson for Minister of Finance Grant Robertson said there were no plans to make changes to GST to allow more exemptions, as these were “complex”, created distortions and would take time to implement.
There were better ways the Government could target need and in Budget 2022, it made the largest single contribution to Pharmac’s medicines budget, bringing total funding to $1.2 billion.
Pharmac director of operations Lisa Williams said it understood New Zealanders having high expectations about timely access to cancer medications and the difficulties people faced paying for medication and its associated healthcare costs.
Williams said Pharmac worked within a fixed budget and had to make difficult choices about what to fund to achieve the best health outcomes.
It had received applications for Avastin for people with ovarian cancer and its clinical advisers had recommended it be funded with medium priority for the first line of treatment of advanced-stage ovarian cancer.
Pegylated doxorubicin (Caelyx) has also been considered by its clinical advisers and recommended for funding.
Te Aho o Te Kahu Cancer Control Agency acting chief executive Nicola Hill said it was committed to ensuring gynecological cancers remained a focus of improvement.
The agency had commissioned a series of articles for primary healthcare professionals on the best practice for early detection and referral for five gynecological cancers, including ovarian cancer.
The purpose was to educate GPs and nurses so diagnosis could occur “at the earliest possible stage”.
A project on “future-proofing” how cancer services were delivered in the reformed health system was also an agency priority.
“Improving radiology services – which are critical for early diagnosis of ovarian cancer – is central to this.”
Source: Cure Our Ovarian Cancer
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