Roy Nugter would love to get to see his only son Kobie, 8 grow up.
Christmas is a special time of year when families get together and reconnect.
For Katikati man, Roy Nugter his most precious gift would be the gift of time. To be able to spend many more Christmases with his wife Debbie and their eight-year-old son, Kobie.
Roy desperately needs help to fund a drug called Keytruda that could help extend his life.
The 58-year-old was diagnosed with stage 4 squamous cell carcinoma of the lungs three years ago. At the time his prognosis was six to 12 months without treatment, or one to three years with treatment.
Roy started chemotherapy treatment in February 2019, by December scans showed the tumours had grown. Chemotherapy started again in January 2020 and continued until May. Scans at that time showed the tumours had considerably reduced in size.
By December the same year, the tumours had grown again and more chemo was carried out until March 2021, when Roy became ill, then ended up needing back surgery.
"I'm still alive and the chemo worked well. But long term it is not good," says Roy.
"My oncologist, Dr Richard North said that there is a 33 percent chance Keytruda could cure me, 33 percent chance it will give me a lot longer to live, and a 33 percent chance it will not work at all.
"On the basis of that information, my goal is to stay alive and fight as long as I can."
At various times throughout his illness, Roy says his oncologist has suggested Keytruda would be a good option if he could come up with the money.
Keytruda is funded for certain lung cancers and melanoma (skin cancer), but not squamous cell carcinoma which has metastasised to Roy's lungs. His only option is to pay for the treatment himself which costs $120,000 for 10 treatments.
"This seems grossly unfair," says Roy. "Anyone with skin cancer should have treatment funded."
In March Roy wrote to Pete Chandler, CEO of the Bay of Plenty District Health Board asking that he consider Roy's circumstances to fund Keytruda outside of the current funding restrictions.
In his reply, Chandler said Keytruda is not currently funded within New Zealand.
"We have explored various options to see if there is any route to provide assistance, but it is with great regret that this is not something we are able to fund for you," Chandler said.
"Whilst we would love to make an exception to support you at this extremely difficult time, we have approximately 70 similar requests a year which would be equally warranted — we cannot ethically apply special provisions to just one family."
Chandler said in his reply that he hoped ongoing funding increases (from Government) would include Keytruda.
Roy also wrote to the Prime Minister, Jacinda Ardern in April with the same request. Two months later he got a reply from the Minister of Health Andrew Little. The Minister stated that he understood that Roy and many other New Zealanders would like Keytruda to be funded.
Pharmac is the government agency responsible for determining which medicines receive public funding in New Zealand. Pharmac operates independently of the Minister and Ministry of Health.
Little said in his reply, that it was not appropriate for him to become involved in Pharmac's decision-making processes.
"Pharmac operates within a fixed budget and is unable to fund every available medicine.
"I am advised that there are several funding applications for Keytruda for the treatment of different cancers currently being considered by Pharmac. No final decisions about funding have been made at this stage."
Little said in his reply that the Government this year provided a budget increase to Pharmac's budget of $200 million over four years and an additional $40 million in the Combined Pharmaceutical Budget, as part of Budget 2021.
"Pharmac's Combined Pharmaceutical Budget for the 2012/2022 financial year will be $1.085 billion. More than 15 percent of this budget is spent on cancer medicines," he stated.
The Nugter's owned a block south of Katikati which was their dream lifestyle. The couple was blessed with only one son after four years of IVF treatment.
"Needless to say Kobie is a much wanted and loved little boy."
Roy's job cleaning service stations and forecourts from Whitianga to Gisborne and across to Hamilton meant long 60 hour weeks and two nights away most weeks. When he was diagnosed with aggressive terminal cancer in 2018, the block became too much and by the end of 2019 they sold it and moved into town.
"It was a shock to be told, and my wife was devastated. But it is what it is and we have to make the best of it."
Roy went from earning $1100 a week to $240.
"I was lucky enough that I had some insurance and superannuation that has kept us going. Debbie is fortunate to have a part-time job, that she is able to do from home, and very generous employers that allow her to work around chemo, and hospital appointments."
The chemotherapy treatment left Roy with no energy and while there are things he can't do now he is positive. He likes to play lawn bowls at Katikati and was good at it, but no longer has the drive to practice.
"I like to go because it's my release. I coach bowls sometimes, help behind the bar and do the club's advertising and sponsorship."
Roy's main concern is his son.
"Kobie is my rock. I believe we both should have many years of life to make great memories."
Kobie's passion is Lego, he plays cricket and this is his first year at Scouts. Roy takes him to the skatepark at Omokoroa to have a day out together.
Now under Hospice care the family spent a week at 'The Mansion' in Rotorua (a Ronald McDonald House) in February where, thanks to very generous sponsors, were able to visit some of the popular tourist activities in Rotorua for free, or they were heavily discounted. Lots of photos were taken and memories made of the fun times there.
"The support Hospice and the Cancer Society give is amazing."
Roy admits there are sad times, but he is not afraid of dying.
"It's not fair on Kobie. I don't want him to be without a dad.
"I want to get fixed and get back to work and support my family again."
Roy doesn't like asking for money but it is his only hope. He has started a givealittle page 'For my son Kobie' - https://givealittle.co.nz/cause/for-my-son-kobie
"All I need is 12,000 people to give $10 each. I'd be grateful for every cent I can get."
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