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A young mother and primary school teacher who received a shock bowel cancer diagnosis faces trying to find more than $100,000 for life-extending drugs that the two major political parties are at odds over.
Adrienne Smithson, from Auckland’s North Shore, was diagnosed with stage 4 bowel cancer in July, aged44.
Smithson - known as Ady by friends and family - has been told by her oncologist that she is among the 40 per cent of bowel cancer patients who could benefit from a cancer drug called Cetuximab, which is not funded in New Zealand.
Cancer patient advocates say the cost of the drug underlines the disparities between New Zealand medicines and other countries. It is funded in 52 other countries.
The National Party has jumped on their cause, promising to fund Cetuximab and 12 other cancer drugs if elected - a move which Labour says would redirect funding away from other drugs and trample on the independence of the bulk-buying agency Pharmac.
Smithson’s oncologist told her that without treatment she could die within an estimated six months.
With chemotherapy, which she started in the public system on Friday, she might live for two years. Combining chemotherapy with two unfunded drugs - Cetuximab and Avastin - might extend that prognosis to an estimated three years or more.
Because the two drugs are not funded she is having them administered by a private oncologist. She has been quoted $75,000 for the Cetuximab treatment and $45,000 for Avastin.
Smithson said she had withdrawn her KiwiSaver funds and the family’s “rainy day savings” to cover the bills so far, and she and her husband James were thinking of selling a car. They were down to one income after she became too fatigued to continue her work at Kauri Park School in Beach Haven and resigned two weeks ago.
“On the scale of things there are people who are hurting more than us,” she told the Herald. “But there have been some sacrifices, for sure. We’re not at the stage of re-mortgaging the house but it may come to that.”
Adrienne Smithson says the hardest part of her illness has been telling her two daughters Dominique and Casey.
Funding discussions about Cetuximab caused an internal squabble at Pharmac in 2020. The agency’s cancer treatment expert advisory group recommended funding the drug but that was overruled by its oversight committee, which disagreed with the evidence.
Advocates expressed disbelief at the time, noting the widespread availability of the drug overseas and the fact Pharmac has not funded a new bowel cancer drug for 20 years.
Pharmac responded by saying its job was to look at all the evidence and make a decision in the interests of all New Zealanders.
The issue was given new life last month by National’s election promise of 13 funded cancer drugs, which it said would be funded by reinstating the $5 co-payment on prescriptions.
The Labour Government said the policy would simply be taking medicines from one group and giving them to another and risked interfering with Pharmac’s independence.
Smithson said her diagnosis “came out of nowhere”. She had no known family history of bowel cancer and no symptoms. She had none of the risk factors and was exercising regularly, drinking little alcohol and maintaining a healthy diet.
And despite her age, she was on the lookout for bowel cancer symptoms because a close friend was diagnosed at just 26 years old.
Smithson said she first felt a “twinge” in her abdomen in July while on holiday on the Sunshine Coast, and when it didn’t subside, a series of checks in New Zealand eventually revealed cancer in her ovaries, lungs and liver - all traced back to her bowel.
“It was just absolutely devastating. Even at the stage that I got the diagnosis I still felt really good, I was still working and living a healthy lifestyle. It was just ‘How can this be possible?’ I felt like the world had tipped upside down.”
The hardest part has been telling her two daughters, Dominique, 13, and Casey, 10. She and James have agonised over how much information to give them.
“My children have actually been coping really well, because we have tried so hard to keep the normal routines. But I’m just not able to do things that I normally would, and they are starting to find that really hard - they said to me the other day ‘Mum, you’re always in bed’.”
The national bowel screening programme begins at age 60 in New Zealand, though there are calls for it to be lowered as evidence increasingly shows it is becoming a younger person’s disease.
“You get people like me where it is silently and insidiously doing its thing and you find out one day you’ve got stage 4 cancer. And suddenly you need things to move really, really quickly.”
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.
