Mandy Grantley says cancer patients who pay for unfunded drugs should be able to have them administered alongside their chemotherapy. She has to pay tens of thousands to have the medication in a private facility. Video / Alex Burton
After she was diagnosed with cancer, Auckland woman Mandy Grantley raised $25,000 in donations to pay for a life-extending drug.
It was just the start of her big treatment bills. Grantley, 58, now has to pay more than $40,000 for the drug to be administered in a private clinic onthe North Shore.
That is because of a rule preventing unfunded drugs from being dispensed in public hospitals.
The law was once described as “wrong on many levels” by Health Minister Dr Shane Reti, but he has now confirmed that the Government is not prioritising an amendment to the legislation.
Grantley, a mother of two, was diagnosed in 2018 with stage 4 bowel cancer. She went into remission after treatment but tumours were later detected in her lungs. Her oncologist recommended the unfunded drug cetuximab.
She is likely to begin her fourth round of chemotherapy next month, and her third round of cetuximab, which slows or stops the growth of cancer cells.
The price for the drug, which is manufactured by American pharmaceutical company Eli Lilly, is capped at $25,000. Once that price is paid a patient can get it again multiple times for no further cost.
But the cost of her having it administered in a private clinic is $46,000, which covers 12 treatment sessions over six months. She paid a total of around $35,000 and $40,000 the last two times she was treated with the drug.
A Herald investigation published last month found huge disparities in what private clinics charged to administer cancer medicines. Some clinics were charging up to $27,000 more than others, despite the cost of the medication being the same.
Every fortnight, Grantley will go to the private facility to take cetuximab. The following day, she will go to Auckland City Hospital to have chemotherapy treatment for tumours in her lungs.
It did not make sense that she could not have the drug at the same time as her chemotherapy, she said.
“The Government doesn’t have to pay for it. I’m sitting there having chemo and that takes two hours, this would probably take half an hour, and they just have to hook it up.”
Grantley was once included in a campaign by Shane Reti to change the rules for administering unfunded medicines. Reti has now confirmed a law change is not on the agenda. Photo / Alex Burton
Mary Bradley, from Bowel Cancer NZ, said workforce shortages were often cited as one of the reasons against unfunded drugs being given in hospitals.
“But the nurse and patients would say that they’re in the hospital already getting the public hospital drugs, it is just a matter of changing out the bags.”
While in Opposition, Reti led a campaign to allow unfunded drugs to be administered in public hospitals. As part of that campaign, he invited Grantley onto a radio show to highlight her situation.
Reti also drafted a member’s bill which was pulled from the ballot in 2021. The bill did not have the support to progress past the first stage and was postponed.
At the time, the Labour-led Government said allowing patients who had enough resources to fund their own treatment to take up space in the public health system would worsen inequality.
He added: “Administration is mostly an armchair for one to four hours with a chemo nurse and some IV equipment... Surely they can at least sit in an armchair at their local DHB and have the medicine administered.”
Grantley said she had contacted Reti’s office since he had become Health Minister, along with Prime Minister Christopher Luxon, but had not heard back.
A spokeswoman for Reti said the Government had agreed his proposed law change would not be progressed.
“Our focus was to deliver other cancer objectives first, particularly breast cancer screening extension and cancer medicines.”
Reti has transferred the bill to a National Party backbencher, Hamish Campbell, and it has been returned to the ballot.
Grantley said the argument that only wealthy people could pay for unfunded drugs did not stack up. She raised the money for previous rounds of treatment through the website Givealittle. She worked as a personal assistant at a real estate office in Mt Albert, and her husband ran a “struggling” importing business.
Cetuximab, which is funded in more than 50 countries, is on the list of drugs which will be funded as a result of the Government’s $600 million boost for Pharmac over the next four years. However, it is not yet known when it will be available to patients, and Grantley’s treatment is urgent.
The Government had initially planned to fund the medication in this year’s Budget but this did not happen. After an outcry, it announced the Pharmac funding boost last month.
“You don’t promise something back in November 2023 and not follow through,” Grantley said. “I was a National person but I’m not voting for anyone.”
“It’s humiliating,” she said, covering her face with her hands. “It is so embarrassing asking for money, at my age.”
Isaac Davison is an Auckland-based reporter who covers health issues. He joined the Herald in 2008 and has previously covered the environment, politics and social issues.
