Katikati man Roy Nugter's rare cancer is spreading through his body. But he's not ready to give up on life and is fighting to stay alive for his young son.
A man battling a rare cancer is so desperate to stay alive for his 10-year-old son that he’s resorted to distributing leaflets asking for help to afford a “miracle” drug that could extend his life.
Roy Nugter and wife Debbie even considered selling their modest home in Katikati, Bay of Plenty, to help pay the $100,000 he needs for a full course of Keytruda. But the thought of leaving his family homeless fills him with dread.
Roy was 55 when he was told he had stage 4 squamous cell carcinoma of the lungs.
The doctors who diagnosed his rare cancer in 2018 estimated he likely had one to three years left. He’s lasted four-and-a-half.
Roy’s cancer has since spread, resulting in two brain tumours and others in his body. One sits perilously close to his spinal cord and the other near his trachea. The chemotherapy he was on is no longer effective.
“I’m not confident I’ll still be here by Christmas,” Roy, 60, says. “But I’m going to try.”
It comes after the Bay of Plenty Times yesterday shared Paengaroa mum-of-three Debbie Robins’ story of having to sell vehicles to help cover $132,775 for unfunded treatments in her battle against ovarian cancer.
Roy is also trying to raise money to fund his treatment. He’s putting pride aside to share his story in the hope it might help raise enough to access Keytruda – a treatment that could help his immune system fight the cancers.
David and Glenda were a core part of the Nugter family, living in the same home and helping to care for Roy and Debbie’s son, Kobie.
The couple had hoped Dave would fill the fatherly role for Kobie when Roy was eventually no longer able.
Debbie’s brother was also killed in a crash and other family members have died in recent months.
Despite a near-fatal sepsis infection last year, Roy says he’s not ready to go just yet.
“I’ve always been a fighter and I want to show my son you’ve got to fight as well, you can’t give up.”
Roy Nugter and son Kobie, 10. Roy has a rare cancer that has spread to his brain. Because it's so rare, he can't access life-changing treatment Keytruda. Photo / Alex Cairns
Roy has fought cancer before. When he was 26 and living in Australia he was diagnosed with Hodgkinson’s disease. He eventually overcame it with treatment.
“I think because I’ve battled it before, when I first got sick, I suspected I had the same again. When they said it was an aggressive terminal cancer, that was absolutely a shock.”
The skin cancer spread into Roy’s lungs and eventually elsewhere, including his brain. The tumours have caused him to lose most of the use of his right hand and he has only limited use of that arm.
Because the type of cancer is so rare, it does not meet the threshold for Pharmac funding for Keytruda, Roy says.
Pharmac funds Keytruda for some cancers, within certain patient eligibility criteria. In March, it announced it would fund Keytruda for some skin and lung cancers.
Roy believed that would include cancers caused by smoking.
In his view: “People can go out and poison their bodies and get a drug [others can’t]. It’s pretty unfair.
“I’m not saying they shouldn’t have it but I think the rest of us should be able to too.”
Roy says the family has no option but to ask people for help, “as much as I hate it”.
Debbie helps to explain as Roy becomes lost for words: “It’s really hard but somebody’s life is on the line. You have to push that other stuff aside, your pride and that.”
Roy used to work as an industrial cleaner, earning more than $1000 a week in the hand. Now the family survives on $350 a week from a sickness benefit and superannuation.
In addition to a Givealittle page that has accrued $37,123, Roy has printed hundreds of leaflets asking for help and placed them on cars in car parks. He’s also written letters to various politicians.
Debbie was working part-time until her family’s horrific crash, when she left to help look after Glenda as well as Roy. He can no longer drive so both he and Glenda rely on Debbie.
Roy says the couple have considered selling their Katikati home to fund the drug, “but then I might die and my family is left homeless”.
Roy believes the cancer drug Keytruda is his last hope.
Health insurance only covers so much, he says.
The family hopes sharing his story helps to raise enough money for a course of Keytruda.
“It’s just so important now, with the brain tumour, and with the chemotherapy I was on not working, I think time is limited,” Roy says.
“There are a lot of people out there with tough times. I don’t expect people to give me money if they can’t afford it. But for those who can, just $10, my family and I will be forever thankful.
“If I could find a way to do it myself, I would.”
Roy admits there have been moments where he’s asked himself, “Why bother?”
“Then I think about my son. He’s the one that needs me.
“I’ve got to fight for my life.”
Roy and Debbie say they’ve spoken to Kobie about the situation.
“He knows I’ve got cancer. He’s asked the question will it kill me? We’ve told him it could, it will, but when? We don’t know.
“Truth is, if I didn’t have Kobie I don’t think I would push so hard.”
Roy and Debbie say they were blessed with Kobie after four rounds of IVF treatment. All Roy wants is the chance to see his son grow up and to be “a normal parent”.
“I think time is a lot shorter than it has been, which is scary, but I look at the positive – when they gave me one to three years, I got four-and-a-half,” Roy says.
“The goal is to get Keytruda.”
Pharmac director of operations Lisa Williams says it understands and appreciates how difficult it is for people unable to access certain cancer medicines.
“Pharmac’s role is to assess and prioritise which treatments will deliver the best possible health outcomes for New Zealanders from the budget we have available. We use a unique funding model, working within a fixed budget, which is different from the rest of the world – it means we have to make difficult decisions [about] which treatments we can fund.”
Williams says there’s a “separate funding assessment pathway” that allows consideration of applications from doctors for the funding of treatments “for people whose clinical circumstances are unique or unusual”.
“We empathise with all New Zealanders who are unwell and their whānau who support them. Hearing how medicines impact the lives of New Zealanders is really important in helping us understand what treatments we should be funding.”
