A 25-year-old with cancer faces moving to the United Kingdom in the hope he can extend his life by accessing treatment out of reach in New Zealand.
Toby Fuller, from Wellington, is living with multiple myeloma, a type of blood cancer.
He says he’s taking the last line of funded maintenance chemotherapy available and due to limited funded treatment options available in Aotearoa, Fuller says he is not expected to reach the age of 30.
Myeloma is a relapsing remitting disease, requiring a new combination of treatments at each relapse, or when serious side effects mean different treatments are needed.
When Fuller’s current treatment stops working, he says he’s been told the next best option, daratumumab, costs about $220,000 for the first year.
Instead, on the advice of one of his doctors, he is seriously considering a move to the UK – the country he was born in but left at age 6 – or Australia, where more cancer treatments are available.
About 2500 New Zealanders are living with myeloma and around 400 new cases are reported annually.
Fuller started getting sick while studying in Palmerston North, he was lethargic, breathless, and vomiting.
A scan in early 2021 found a “massive” plasmacytoma, a tumour comprising plasma cells of bony or soft tissue.
BRUCE MACKAY/The Post
Toby Fuller with his mum Judi.
He put his life, work and studies on hold to move home to Wellington for treatment, which initially involved 27 days of radiotherapy.
But he had a relapse in September 2021 and needed three cycles of chemotherapy.
In January 2022, Fuller underwent an autologous stem cell transplant, which uses healthy blood stem cells from your own body, rather than a donor, to replace bone marrow that’s not working properly.
An autologous stem cell transplant can make myeloma go away for a time – even years – but it doesn’t cure the cancer, which often returns.
After the transplant, Fuller started maintenance chemotherapy with lenalidomide.
He said this is the last funded option for him, after he had an allergic reaction to another treatment.
With innovations in treatment over recent years, myeloma is now being seen and treated as more like a chronic disease in many countries, where patients are able to remain on treatment and keep well for increasingly longer.
“People are living longer and doing more,” he said.
Fuller said when he had the transplant, he was told his prognosis was about 3 years.
“It would be really hard to leave my family and friends [if he were to move overseas]… but I’m keen to live a bit longer.”
Fuller is doing a Master’s in health science, looking at cancer-related fatigue and lowered cardiopulmonary function in blood cancer patients.
“There’s really little research [in this area], and unfortunately I’m part of it.”
He’s hoping he will be able to complete his Master’s in 2024, before needing to move “before I’m unwell again”.
The disparity in the funding of modern haematology-oncology drugs has been described as an “appalling gulf” by experts.
In July 2023, a Kiwi haematologist wrote an open letter to health officials calling for the end to the “unconscionable” delay in funding “highly efficacious” daratumumab.
1 NEWS
Often in the headlines, Pharmac is responsible for deciding what medicines are funded in NZ. (Video first published June 20, 2022)
Myeloma New Zealand patient and trustee Nichola Oakenfull said it is “absolutely heartbreaking” that if Kiwis move just a few hours’ flight away “you have access to these medicines available in 49 other countries”.
According to Myeloma New Zealand, no new myeloma treatments have been funded in Aotearoa in nine years and patients are limited – depending on whether they’ve had a transplant – to two or three lines of funded treatment, it says.
Oakenfull said gaps in funded myeloma medicine access have real implications for Kiwis.
Modern drug options tend to have fewer taxing side effects, and as your first period in remission is often your longest, “it’s important to get good drugs for your first or second line”, she said.
Newer medicines give people longer periods between needing to change treatments, and allow them to live a “more normal life”.
“There is absolutely a cure on the horizon for myeloma, but in New Zealand we’re just so far behind the rest of the world. If we’re so far behind, how can we catch up?”.
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Myeloma New Zealand’s Keep Us Living campaign is advocating for health officials to fund a number of further treatment options in Aotearoa, given private upfront costs are out of reach for many, it says.
Pharmac’s pharmaceuticals director, Geraldine MacGibbon said they empathise with all New Zealanders living with cancer, and appreciate that not being able to receive a funded treatment is “challenging”.
Pharmac is considering a number of funding applications for daratumumab, the first received in July, 2017, for the treatment of relapsed or refractory multiple myeloma.
“It is ranked on our options for investment list, which means it is a treatment we would like to fund.”
“Unfortunately, Pharmac is unable to give a definitive time-frame for if, or when, a decision to fund daratumumab will be made,” MacGibbon said.
MacGibbon said Pharmac understands and can appreciate that patients, clinicians, and advocacy groups have “high expectations about having timely access to new medicines for cancer conditions”.
“We would love to be able to fund every medicine for every condition, but unfortunately, that’s not possible. As we operate on a fixed budget set by the government, we have to make difficult choices about what medicines, vaccines and related products are funded.”
Pharmac is also considering other treatments like pomalidomide and carfilzomib for the treatment of relapsed or refractory multiple myeloma, both of which are also ranked on its options for investment list, MacGibbon said.
