Around 360 Kiwis are each year diagnosed with multiple myeloma, a cancer of plasma cells that usually arises in the bone marrow. Photo / 123RF
Around 360 Kiwis are each year diagnosed with multiple myeloma, a cancer of plasma cells that usually arises in the bone marrow. Photo / 123RF
Kiwi cancer sufferers are being denied a drug that saves lives in other countries, including Australia and the United States.
The drug Daratumumab is used to treat myeloma, a blood cancer that affects white blood cells and weakens bones. Up to 2500 New Zealanders are currently living with myeloma. One new case is diagnosed every day, and on average one Kiwi dies of myeloma every second day, according to Myeloma New Zealand.
About 9000 New Zealanders die from all forms of cancer each year, according to the Cancer Control Agency.
The life-saving drug is not currently funded by Pharmac although officials from the government agency, which decides which medicines are subsidised for the public, said Daratumumab is among several myeloma treatments under consideration. Auckland-based supplier Yanssen has submitted an application that a Pharmac committee is discussing this week.
Yanssen first submitted its application in 2017. It’s a frustrating process for Wellington woman Nichola Oakenfull, who was diagnosed with multiple myeloma in June 2020. At 40, she is 30 years younger than the average age for this cancer.
Myeloma sufferer Nichola Oakenfull at her home in Johnsonville, Wellington. Photo / Mark Mitchell
She said: “I was told to expect to live 10 to 12 years. I’m on continual treatment now, but I don’t know if I will even get the 10 to 12 years. The treatments that allow myeloma to be managed more like a chronic rather than fatal disease, that are standard of care throughout the Western world, are simply not available here.
“I’m only 43, and I should have years ahead of me to work and be a mum and wife. I could if we sold up and moved to Australia but we simply can’t afford that. New Zealanders need to know how dire the state of medicines funding is in New Zealand and the pain and grief it causes for families like mine.
“When I was diagnosed, my son was 6 years old, my husband had a business that I helped with and I was working full-time in a senior role that I loved. In the following 18 months I went through 32 weeks of chemotherapy and a stem cell transplant that I was told could buy me two years before I’d relapse.
“The prospect of dying before my son finishes school is unspeakable.”
Daratumumab is available in Australia. National’s health spokesman Dr Shane Reti said: “I am interested in reducing the current 18 chemotherapeutics that are funded in Australia and not in New Zealand.”
Health minister Andrew Little said: “Politicians don’t decide which medicines should be funded.” He points to the Government’s $71 million boost to Pharmac this year, and an earmarked $120 million increase next year.
Pharmac’s director of operations, Lisa Williams, said that daratumumab is among several myeloma treatments currently being “considered” for funding. “They are medicines we would like to fund when we have the budget available …They have received positive recommendations from our specialist advisory committees and the next step will be for us to rank these as options for investment.”
Williams adds, “It is very important we hear and listen to the voices of people directly affected by ill-health when assessing a medicine. Hearing from them, alongside clinical evidence, helps us to understand the impact funding myeloma treatments would have.”
Belinda Waymouth, a Kiwi living in Santa Monica, has myeloma. Daratumumab has been on the US market since 2015. She credits Daratumumab for saving her life, and describes it as “a game-changing immunotherapy drug”.
Belinda Waymouth is battling the blood cancer myeloma. Drugs used to fight myeloma and funded by equivalent agencies in Australia, US and UK are not funded by Pharmac. Photo / Supplied
She said: “I started receiving Daratumumab as soon as I got diagnosed last July. The day I was informed I had this blood cancer, my oncologist told me it was ‘the best of all the metastasizing cancers to get’ because unlike pancreatic cancer, it’s not a killer. I would go through treatment, and live a long, happy life. The cancer would just be a chronic condition I live with, but would not define me.”
She was in New Zealand recently and spoke with Nichola Oakenfull. “I cried talking to her on the phone. I was so shocked and sad that fellow New Zealanders were facing death sentences when that doesn’t need to be the case.
“Yes, I’ve had chemo, radiation, hell I even had my left eye sewn shut for a month because of the facial nerve palsy I got from the tumour that grew in my head - 20 per cent of myeloma patients get tumours. And I had a stem cell transplant in December, lost all my hair, got super sick … but now I’m surfing again, feeling great and living a normal life.
“I’ll be getting a shot of Daratumubab in my tummy once a month for the foreseeable future. I’m 60 years old and have a grandmother who’s 103 years old, if I follow in her longevity footsteps I could be here for quite a while.”
