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ANDY JACKSON / THINGS
Karl Taylor, 56, died after a two-year fight with terminal cancer.
A Taranaki father who struggled to obtain vital government-funded cancer drugs has lost his battle against the disease.
Karl Taylor, 56, died on Tuesday, nearly two years after he was diagnosed with terminal lung cancer and told he had only months to live.
The father of six spent his final years struggling to raise money for life-prolonging drugs and trying to finance them for himself and other New Zealanders.
ANDY JACKSON / THINGS
In March 2019, Karl Taylor sold everything he had to pay for alectinib (Alecensa). (Video first published in March 2019)
He ended up selling most of his possessions to buy the medicine he needed and was later forced to move into a caravan in one of the colder parts of Taranaki.
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Two of Karl’s four daughters, Hope, 26, and Karla, 20, said their father, who died at Taranaki Base Hospital, would be “greatly missed.”
“We feel broken,” Hope said. “It doesn’t feel real.”
The women said they felt at peace because their father was no longer in pain.
“Dad was happy, smiling,” Hope said. “He has to die with this whole family around.”
Andy Jackson / Stuff
Karl got four months of his life-changing drug alectinib thanks to donations from the public.
The women said they would remember their father as an amazing father, who would still try to do things for his family despite his illness.
“He did his best with what little he had,” Hope said.
Karl, a former paint sprayer and welder, was diagnosed with stage four lung cancer in late 2018 and quickly discovered that it was a rare type called adenocarcinoma.
In early 2019, she began selling everything she owned and living with her children in an attempt to finance a life-prolonging drug called alectinib (Alecensa).
Andy Jackson / Stuff
Karl spent much of his battle working to raise funds for medicines that others needed.
The drug cost $ 6,500 a month and at that time was not funded by Pharmac, the Crown entity that decides which drugs and pharmaceuticals are subsidized for use in public hospitals.
Karl received only $ 2,400 a month as a beneficiary.
“I believe that everyone has the right to live, but I will not live if I cannot afford it,” he said at the time.
Talking like this resulted in enough donations for a four-month supply of the drug.
He said that his greatest concern was not for himself, but for the people in his situation in the future.
SIMON O’CONNOR / THINGS
Karl Taylor wrote a letter to Jacinda Ardern in April 2019 asking her why she has to pay so much for cancer treatment. (Video first published in April 2019)
In April 2019, he wrote a letter to Prime Minister Jacinda Ardern, asking her to consider subsidizing the drugs he and others needed.
He even marched for breast cancer funding in Wellington once.
When the government announced that it would fund alectinib, along with two other drugs, Karl had already paid more than $ 30,000 in supplies and was living in a caravan in one of the coldest parts of Taranaki.
He continued to pressure the government to do more.
“It’s just three drugs that they have funded. I want to advocate for those other drugs that are needed, despite what they have done for me.”
Andy Jackson / Stuff
After selling everything he owned, Karl lived in a caravan while taking his cancer drugs.
Earlier this year, he said that alectinib had stopped working.
He was taking a free trial drug, lorlatinib, but was hopeful of Keytruda, which he said cost $ 60,000 a course.
Although Pharmac had announced that it planned to fund Keytruda, it later backtracked and said it could not afford the investment.
Karl’s daughters said that in recent months he tried chemotherapy, that it made him sick, and that he was about to start radiation treatment.
But he never stopped talking about Keytruda, Hope said.
“He clung to hope and faith.
Andy Jackson / Stuff
Karl’s funeral will be held Saturday at the Oasis Church in New Plymouth at 10 am.
“He’s been through an incredible journey in the last few years,” said Hope. “I don’t think I could have fought that battle.”
Christmas will be difficult for the family, the women say.
“I wanted to take Dad camping, he will be camping in my heart,” Hope said.
“You want it here, but that’s selfish.”
– Karl Taylor’s funeral will be held at New Plymouth Oasis Church at 10 am on Saturday. His family is raising money through a Givealittle called ‘Karl’s Journey’.
