In our latest issue of Spot News, we shared a story about melanoma patient Jason Hooker, navigating having to fund his stage four melanoma treatment just months after his son went into remission. Unfortunately, stories like Jason’s and this one about Jeff Paterson are far too common and are a cruel reminder of how PHARMAC’s lack of funding makes life-saving and life-extending treatments financially out of reach for many New Zealanders.
What’s more, the speed and transparency of PHARMAC’s decision-making is also adding to the burden being placed on patients.
For example, in February 2019, PHARMAC received an application for KEYTRUDA funding for adjuvant treatment of stage 3 melanoma, yet four years later, there has still been no decision made.
An extraordinary young advocate to take on PHARMAC was Jeff Paterson, who sadly passed away in 2016 from melanoma at just 23 years old.
Jeff had been studying for his master’s in architecture and was a talented all-rounder – intelligent, good at sports and music. He loved socialising with his family and friends and battled melanoma on and off from age 16.
Towards the end of his life, despite being unwell, tired and in pain, Jeff fought an heroic battle to get PHARMAC to fund KEYTRUDA for advanced melanoma patients. Although his campaign was partially successful, the job remains far from done. There are thousands of New Zealanders, just like Jason Hooker, battling melanoma right now, and unfunded treatments remain at the heart of this.
Around 300 people in New Zealand die from melanoma each year. Yet, the most effective treatments remain unfunded and are financially out of reach for many New Zealanders – immunotherapy drugs at stage 3 and BRAF-MEK inhibitors at stages 3 and 4. These melanoma drugs that aren’t funded in New Zealand are: dabrafenib, trametinib, vemurafenib, cobimetinib, ipilimumab, encorafenib, binimetinib, pembrolizumab (for resected stage 3 patients) and nivolumab (also for resected stage 3 patients).
PHARMAC must step up to the plate and make the changes needed to act on the undeniable lessons learned from Jeff’s death and the extraordinary cause he championed.
Jeff’s family had the ongoing stress of having to raise $11,000 each month for treatment. His mother, Anita Kooge, says they raised around $120,000 throughout Jeff’s illness by holding galas, raffles, and sausage sizzles, and Jeff sold donated items on Trade Me to remain on his treatment. This included taking dabrafenib, which Anita said within two weeks of starting this drug, his tumours had gone.
“It’s all-consuming. You do it because you’d move mountains for your child, but you shouldn’t have to. Looking back, I wish we hadn’t done it. It took away precious time. It wasn’t fair on us,” said Anita.
“It went beyond just financial implications, too. The psychological stress of knowing your child’s life depended on your ability to find the next dollar was unbearable.”
Anita recalls having to decline a combination of BRAF/MEK inhibitor drugs on offer because of the unaffordable $20,000-a-month cost.
“The stress of organising those fundraising events was huge,” says Anita. “When you’re sick, you need to concentrate on getting well, not having to fundraise for treatment.”
Jeff’s melanoma had spread to his brain, and he had four inoperable lung tumours – so drugs were the only option to save his life.
“He wasn’t able to have KEYTRUDA in the end because he was just too sick. But if it had been funded and given to him at stage III, when it was in his glands, he may still be with us. That makes me so angry. It was too late,” says Anita.
“PHARMAC has been sitting on KEYTRUDA’s funding application for treatment of patients with stage III melanoma for more than four years,” says Anita.
“When are they going to act? PHARMAC buries its head in the sand while we bury our family members.”
“One of the last things Jeff said to me in his final weeks before he died, and as he was slipping in and out of consciousness, was, “Keep going, Mum”.
“So here I am, many years on and still asking the Government to give PHARMAC the funding for melanoma drugs so others don’t have to suffer the way Jeff did.”