A Katikati father with terminal cancer has now raised half of the $100,000 needed to fund a “miracle” drug that could prolong his life after an outpouring of community support for his cause.
Roy Nugter has a rare cancer and is so desperate to stay alive for his 10-year-old son that he had resorted to distributing leaflets asking for help to afford to raise money to buy the drug Keytruda – a treatment that could help his immune system fight the cancers.
Nugter, who has stage 4 squamous cell carcinoma of the lungs, shared his story with the Bay of Plenty Times Weekend last week. Because the type of cancer is so rare, it does not meet the threshold for Pharmac funding for Keytruda, he 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.
Nugter has now raised more than $54,000 on his Givealittle page, with a wave of donations flooding in following Saturday’s story.
“I’m halfway there. I’m blown away. I just didn’t expect it,” he said.
Nugter said he received an email every time there was a donation. By Wednesday afternoon he had received 139 emails. More than $17,000 flowed in within two days from people wanting to help.
“I’m replying to every one of them to say ‘thank you’.”
“It’s just a small thank you but it [each donation] means so very much to us.”
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.
The cancer has since spread, resulting in two brain tumours and others in his body. One sits perilously close to his spinal cord - affecting his use of his right hand and arm - and the other near his trachea. The chemotherapy he was on is no longer effective.
Nugter 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.
His wife Debbie gave up her job when her parents were involved in a horrific crash near Athenree on January 2. Her father David Hard was killed and her mother Glenda was critically injured. Debbie was now the main driver and support for both Roy and her mother, plus Kobie.
The couple considered selling their Katikati home to fund the drug but Roy was concerned his family would end up homeless.
Roy said before last week’s story, he had begun to worry that they would not be able to reach their goal.
“But now, I honestly think I can get there. It’s not going to be easy, and I still need to do things.”
He was already cutting up a fresh batch of leaflets in preparation for distributing them onto cars again.
Roy and Debbie Nugter previously said they were past the point of pride. The need to stay alive long enough to be a father to Kobie, especially since his Poppa was no longer around, was their number one goal.
“The doctors have said don’t start until you can afford a full course. But if can get to $70,000, then I will start it. That will give me seven months to find the rest,” Roy said.
If that meant more leaflet drops and other fundraising initiatives, then so be it, he said.
A full course of Keytruda involves 10 rounds. It is a type of immunotherapy and works by helping immune systems fight certain cancers.
Keytruda is considered a “miracle” drug because of its effectiveness.
Nugter was not sure he would ever be able to thank those who donated enough but he wanted to try, he said.
“It’s just incredible. People are incredible.”
Last week, in response to Nugter’s case, Pharmac director of operations Lisa Williams said it used a unique funding model, working within a fixed budget, which was different from the rest of the world – it meant they had to make difficult decisions [about] which treatments they could fund.
Williams said there was a “separate funding assessment pathway” that allowed 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.”