David Cotton travelled to Germany in a wheelchair to get immunotherapy treatment for his leukaemia. Photo: Supplied
An Auckland man has resorted to treatment for an aggressive bone marrow cancer in Germany after local treatment options were unavailable or rejected by Pharmac.
David Cotton is being treated for acute lymphoblastic leukaemia in Wurzburg because the drug agency declined his application for immunotherapy drugs and there were no approved specialist treatment centres in New Zealand.
He decided to go to Europe again in November for treatment in Germany at an estimated cost of $170,000 to $180,000, which covered one round of the T-cell treatment as well as the rest of his treatment plan.
"It felt like there were constant roadblocks everywhere," he said.
"You're in no man's land in New Zealand with getting access to these latest antibody treatments. The only way out is to go overseas and try to fund it yourself."
Cotton was first diagnosed with cancer in 2008 at age 42. He soon learned his cancer was refractive, so did not respond to chemotherapy.
He was told to organise a hospice admission and start getting his affairs in order.
David Cotton receiving CAR T-cell treatment in Germany in November 2023. Photo: Supplied
"I had one-year-old and four-year-old sons at the time and I thought to myself, that's not the outcome I want. So I began looking into alternative treatments," he said.
An opportunity arose to participate in an immunotherapy drug trial in Germany that left Cotton cancer-free for four years.
When the leukaemia returned in 2016, the drug company allowed him to have another round of the trial treatment that brought seven more years of remission.
His cancer returned in September, when Cotton hoped the treatment - a drug called inotuzumab - could be administered in New Zealand.
Cotton's haematologist applied to Pharmac for drug-funding but the application was denied.
He even offered to fund the drug himself, in the hope of being treated in Auckland.
"I was told if I funded it myself, then it couldn't be administered to me in the public health system. It just didn't seem like there was any pathway at all," he said.
When his haematologist applied for a different immunotherapy drug, Pharmac said Cotton could have one round but only after chemotherapy - a treatment he knew would not work.
"It seemed a little crazy at the time. It was a bit of a storm too because I was very sick in September and October. With this disease, things move along in a hurry, there's no time to muck around really," he said.
Like other cancer patients who have had drug funding applications declined by Pharmac, he has turned to crowdfunding.
"It's going to send me broke, and I'm going to have to rebuild my life again at 57. It's not easy, but at least I'll be alive," he said.
He was currently taking inotuzumab and undergoing CAR T-cell treatment, where T cells in his blood were modified in a lab to detect and destroy cancer cells and put back into his body.
Cotton's partner Lucy flew to Germany for a few weeks but has since returned to New Zealand, because the physical distance and financial barriers were too great to stay with him.
His sons, now 17 and 20, also remained on the other side of the world.
"The past two times I've shown that I'm a fighter, so they have an expectation that I'll fight this and come home. Obviously, they're still quite upset that I had to go, because it turns everybody's lives upside down," Cotton said.
David Cotton and his partner Lucy waiting for their flight to Germany so David can begin his cancer treatment. Photo: Supplied
Lucy said she hoped Cotton could be home for Christmas, but an infected gall bladder had resulted in blood poisoning and emergency surgery, setting back his treatment.
"No family have been able to stay with him in Germany so we are relying heavily on the German family he has been staying with and the medical staff who are amazing," she said.
"At the moment he's a long way from home and needs to recover a bit more to be able to fly and we are looking at logistics around that.
"The sooner Kiwis have the chance of being treated with modern medicine at home, the better."
'We would love to fund all the treatments' - Pharmac
Pharmac chief medical officer Dr David Hughes said while the agency's work was very detailed and complex, people remained at the heart of the process.
"The focus is on the patient and the whānau in terms of health needs, how the condition impacts the patient's health, well-being and life expectancy," he said.
Pharmac had 21 expert advisory committees that reviewed medicine funding requests, including the Cancer Treatment Advisory Committee, which met three times a year and consisted mainly of oncologists and haematologists.
Hughes said it was difficult to comment on Cotton's situation without his full medical history but he was willing to be contacted by people who wanted to further discuss rejected drug-funding applications.
"If there are consumers who have made applications through our tracker who are feeling that they haven't had contact, then I'm very happy to take that up," he said.
Budget constraints meant Pharmac had to take a cautious approach, Hughes said.
"Everyone at Pharmac takes their work incredibly seriously. We would love to fund all the treatments that people need.
"We have friends, family who get sick and we absolutely are affected by the decisions that we make. We take those decisions really seriously. We need to be more transparent, we need to show people how seriously we take this work, how comprehensive the assessments are," he said.
Hughes conceded it was taking too long for drugs approved by MedSafe to be ranked on one of Pharmac's waitlists.
"We want to acknowledge that the 15 months it takes to get from receipt to ranking is too long and we need to work on that very diligently," he said.
"That is a long process and we're working really hard to increase the transparency of that process and make our decision-making processes faster, clearer and simple."
Cancer patients and advocates had called for Pharmac chief executive Sarah Fitt, and board chair Steven Maharey to resign in October, when inappropriate comments Fitt had made about journalist Rachel Smalley and stories of cancer patients having to crowdfund for their critical drugs were made public.
Fitt apologised but did not resign, and announced an eight-point plan to improve Pharmac's culture.
Maharey resigned in December without giving a reason for his departure.
