A 44-year-old father of four given six to nine months to live when he was diagnosed with lung cancer has seen his tumour halve in size thanks to a new treatment he describes as a “miracle drug”.
Patients and advocates are calling on Keytruda to be publicly funded for lung cancer, the country’s biggest form of cancer death which claims five lives a day, because many patients could not afford the tens of thousands of dollars required to pay for it.
The Cancer Society said the drug, which the UK, Europe and the US funded as a lung cancer treatment, was a “game changer” which would definitely save lives.
Jason Guttenbeil developed a cough in April. At first they thought it was pneumonia but the Auckland man’s world fell apart when he was told fluid taken from his lungs and heart was cancerous.
A 7cm tumour was found in his lungs and he was diagnosed with stage four lung cancer and told he had six to nine months to live.
“Not being a smoker ever, it was very much a surprise. It was difficult to comprehend,” he said.
By that stage he was bed-ridden and barely moved from the couch each day.
After two rounds of chemotherapy nothing had changed so he and his family decided to try a different approach.
They had heard that in April immunotherapy drug Keytruda had been approved for use as a first-line treatment for people who had small cell lung cancer with the PD-L1 protein. But because the drug was only publicly funded for the treatment of melanoma, Guttenbeil had to go through the private health system and pay for it himself.
In July he had his first infusion of Keytruda, which is administered every three weeks.
Within six weeks his tumour had halved in size, the cancer on his hip and spine was disappearing and the fluid in his lungs was dissipating.
“I’ve gone from having no hope to clear horizons. I’m not worrying about the end date any more. I feel like I’m getting better all the time,” he said.
“Keytruda has been a miracle drug for me…it’s a wonder drug.”
He’s now four treatments in and hoping things will be even better next time he has a scan.
“It’s a huge relief for my wife first and foremost. She was planning what to do without a husband and with four kids,” he said.
But the cost of the drug meant it was not an option for many of the 2000 Kiwis diagnosed with lung cancer every year.
Guttenbeil pays almost $14,000 for every treatment – about $8000 for the Keytruda, about $2000 for another unfunded chemotherapy drug and about $3000 for administering the drugs.
“It’s a huge cost vs no hope,” he said.
Guttenbeil said the generosity of friends, family and strangers through a Givealittle page set up by his brother had raised about $60,000 to get his treatment underway.
He was so much better he was able to go back to his job as an operations manager in the textile manufacturing industry part time which would also help cover the costs.
But he was worried about those who could not afford the treatment and believed it should be publicly funded so every patient could have the best shot at life.
“There’s evidence that it’s working. It needs to be seriously looked at for the public system because it’s life-changing. How much evidence does Pharmac need?”
Mary Wyatt, 72, is also evidence of Keytruda’s success in treating lung cancer.
She was diagnosed with lung cancer in January and told she had three to eight months to live.
Instead of opting for chemotherapy, which she had been through six years ago when she was diagnosed with cancer of the tonsil, she asked about Keytruda.
Since then she has had nine treatments over six months and her last scan showed the tumour and thickening of the lungs were gone and all but one of her lymph nodes were back to normal.
“It’s amazing. I went from the point of being told I had three to eight months to live and here I am. We’re looking to the future again. It really has been quite miraculous,” Wyatt said.
But, like Guttenbeil, it came at a price. The couple had paid about $50,000 so far.
Drug company Merck Sharp and Dohme said, in an effort to make it more affordable, the company would cover the cost of the drug after a patient had spent $60,000 on it meaning patients only had to pay the private hospital fees.
There were about 350 people using the drug for the treatment of unfunded cancers in New Zealand at the moment, a spokeswoman said.
Despite that it was still out of reach for many.
The New Zealand Cancer society believed the drug, which had a 33 per cent success rate, would save lives if it was publicly funded.
Medical director Dr Chris Jackson said Pharmac needed to be more transparent, engage with experts more and consider such things as an early access scheme to allow access to new cancer treatments which had not yet been considered for funding.
“While we wait for Pharmac to make a decision about funding individual drugs, it’s doctors on the front line that have to tell patients that unless they have the money to pay for these drugs themselves they have to go without. I can assure you that conversation is just heart-breaking,” he said.
“It appears that little has been learned from the repeated disputes over drug funding decisions.”
Pharmac director of operations Sarah Fitt said they had received funding applications for Keytruda, also known as pembrolizumab, for the first and second-line treatment of advanced non-small cell lung cancer and would continue to review evidence .
Clinical advisers would now review extra information requested to decided on funding for it as a first-line treatment.
National health spokesman Jonathan Coleman indicated there would be no change to the way Pharmac worked saying said funding for Pharmac had increased in recent years and the model used to subsidise medicines was world class.
• Funded for the treatment of melanoma.
• Approved for the treatment of non-small cell lung cancer (which accounts for about 80 per cent of lung cancers) where the tumour shows a large presence of the PD-L1 protein.
• Keytruda is a type of immunotherapy that works by blocking the PD-1 pathway which helps your body detect and fight cancer cells.