Auckland teacher Anne Goulter flies to Sydney every week to access a lifesaving cancer drug not available in New Zealand. Photo / Dean Purcell
A weekly trip to Sydney is keeping Anne Goulter alive, but she warns New Zealanders are missing out on cancer “wonder drugs” coming down the pipeline.
Every morning, Auckland school teacher Anne Goulter slips a green band onto her wrist. “Strong Anne” it reads on one side. “F*** cancer” on the other.
Resilience and defiance are two qualities she’s desperately needed since being given the news late last year that her ocular melanoma - a rare type of eye cancer - had spread to her liver. With no effective treatment available in New Zealand, the prognosis was grim.
In February, the mother-of-two was thrown a lifeline when she was given compassionate access to a breakthrough immunotherapy drug, tebentafusp, that’s just been approved for funding in Australia. Without the subsidy, a typical course would cost A$790,000.
The drug, developed by UK-based biotechnology company Immunocore, has been shown to double the average survival rate, with some cancer patients who were on early clinical trials now well into their third year. However, because it’s not registered in New Zealand - let alone funded - Goulter has to travel to Sydney every week to be given the infusions that are keeping her alive.
Each Sunday afternoon, she drives to Auckland airport from her home on the North Shore. By the time she arrives at St Vincent’s Hospital in Sydney and checks in to her overnight accommodation, it’s after midnight, New Zealand time.
The drug is administered on Monday morning, a process that takes about 90 minutes, then she heads straight back to the airport for her return flight to Auckland. It’s the early hours of Tuesday morning before she crawls into bed to snatch a few hours of sleep before starting work at the school where she still teaches four days a week.
It’s a gruelling schedule for Goulter, 61, who keeps herself as fit as possible and was New Zealand’s top female masters athlete in the hammer throw in the 22/23 season. But without the treatment, she’d have only months to live. “Basically, I either sign out or carry on doing what I’m doing - and I’m determined not to sign out,” she says.
“These immunologies are wonder drugs. They give people hope and more of them are in the process of being designed and manufactured. If we don’t get things sorted to make them available here, more Kiwis are going to have to travel [to access them] or they are going to die.”
Lack of access to groundbreaking cancer treatments has been a dominant issue in the news since National’s election campaign promise to fund 13 new drugs available in Australia was not included in Budget 2024 last month. (Tebentafusp, as an unregistered drug, is not one of the 13 on the list.)
In a recent editorial in the New Zealand Medical Journal, Auckland University cancer epidemiologist Professor Mark Elwood estimated about 1000 people a year who die of cancer here would have survived if they lived across the Tasman. His analysis of the data on cancer outcomes showed the survival rate is 11% higher in Australia. And while Elwood believes earlier diagnosis would make the most difference, he says there are 18 medicines available in Australia that “would likely have substantial benefits” to some patients here.
The story behind the lack of access to tebentafusp is a complex one, but with far-reaching implications. The type of cancer Goulter has is extremely rare and global pharmaceutical companies are reluctant to absorb the cost of registering drugs in such a small market as New Zealand, where few patients will ever be prescribed it.
Auckland oncologist Catherine Han says about 30 New Zealanders are diagnosed with ocular melanomas each year. Of those, only a handful will go on to develop metastasised tumours in the liver. In Australia, where the drug has been funded since February under the Pharmaceutical Benefits Scheme (the equivalent of Pharmac), around 35 patients are expected to benefit from it each year.
Goulter was accepted onto the compassionate access scheme, which covers the cost of the drug, a day before the programme closed. Another of Han’s patients, who was part of an earlier clinical trial for tebentafusp, moved to Australia for a year to access the treatment.
To complicate matters further, tebentafusp is a compounded drug that requires mixing with human albumin, a blood product. Currently, there are no drug-compounding companies in New Zealand licensed to handle human products.
Marketed as Kimmtrak, tebentafusp has been approved in the United States, Canada, Australia and Europe, where it’s the first T cell receptor therapy to be approved in the European Union.
Goulter’s Sydney-based oncologist, Professor Anthony Joshua, says tebentafusp is the first drug of its kind that’s been proven to help people live longer. Outside clinical trials, there are no other established treatments for ocular melanoma anywhere in the world. However, Joshua is hopeful a new wave of immunotherapies and targeted oral treatments will see “significant advances” in survival rates in the years ahead.
A “cousin” drug to tebentafusp is being trialled globally to treat ovarian cancer and may be effective against skin melanoma. “There will be other drugs in the future and for more common cancers, so access to them is a problem that needs to be addressed in the longer term.”
Joshua says out-of-country financial assistance has been sought through the Ministry of Health in New Zealand for patients like Goulter, but that has not been forthcoming. “Anne is being very brave and stoic and resilient, but it’s certainly very traumatic for her. It’s a terribly difficult situation and I wish we could do more.”
Goulter has weekly flights to Sydney booked until the end of August, funded through a Givealittle page set up by one of her colleagues. The response has been humbling, she says, and helped relieve the financial pressure. In addition to the airfares, various other expenses associated with her treatment cost the family about $1000 a week.
The green wristband she wears was made by her son’s coach in the US, where Anthony, 23, is on an athletics scholarship at Drake University in Iowa. Following in his mother’s footsteps, he won the senior men’s hammer throw at the 2024 New Zealand championships in March. Daughter Bella, who’s 26, lives in Auckland.
Goulter’s husband, Paul Barmes, is grateful for the community support that’s shown Anthony and Bella just how loved their mother is. “It’s a mental battle,” he says. “We’ve been thrown a lot of curveballs in the past few months, but Annie and I are the most positive people and we’re not going to let the negatives in.”
The only symptom Goulter had experienced before her cancer diagnosis was some “black lace” on her vision. If she’d been having regular eye tests, she says, the growth would have been picked up earlier and her prognosis would not be so dire. Secondary tumours were found only five months after surgery to excise the ocular melanoma behind her right eye, which was also removed (she has since been fitted with a prosthetic).
Catherine Han has been in negotiations with Immunocore’s global pharma partner, Medison, to bring tebentafusp into New Zealand specifically for Goulter under Section 29 of the Unregistered Medicines Act, and compound it on-site at Auckland Oncology, where she already runs clinical drug trials. Goulter also hopes to be accepted onto a possible trial in Australia later this year for a targeted oral therapy, which would likely require less frequent trips away from home.
“The oncology world is very dynamic,” Han says. “We have lots of trials all the time so it’s a question of just hanging in and hoping a new treatment will be on the horizon.”
After a rough first month on tebentafusp, the side effects have been minimal for Goulter, compared to the often-crippling impact of chemotherapy treatments. She has been able to continue classroom teaching and still throws the hammer once or twice a week. This month, she gave a video presentation at the Australasian Ocular Melanoma Alliance summit about her experience.
While she and Barmes did consider relocating to Australia, her family, her job and her support network are all here. “I can be productive and live reasonably normally,” she says. “Quality of life is so important and it changes how you see ‘normal’. I want normal. I love normal. Normal to me now is just magic.”
Joanna Wane is an award-winning senior feature writer in the NZ Herald’s Lifestyle Premium team, with a special focus on social issues and the arts.
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