A Makahu father with a rare form of cancer is being denied a drug that may give him more time with his four young children.
James Grieve, 44, was diagnosed with Desmoplastic Small Round Cell Tumour (DSRCT) last July, when the family were living in Perth.
Grieve told his oncologist the family, who were originally from Britain, were only in Perth on a work visa and he and his wife Victoria wanted to take their children home to Taranaki.
But they were told it was a very aggressive sarcoma and he had to start chemo straight away, Grieve said.
“He made it clear I was going to die. I was going through chemo because I have four kids and something was better than nothing.”
After six rounds of chemo, nothing had changed, he said, so they came home.
But before they left, Grieve’s oncologist in Australia gave him three months worth of a trial drug, Pazopanib, which may inhibit the tumour’s growth and give him more time with his four young children.
However, back home in New Zealand Pharmac won’t fund the drug, which costs $10,000 for three months supply.
In a letter to MidCentral oncologist Dr Richard Isaacs, Pharmac said if Grieve was granted Pazopanib, people with other soft tissue sarcomas would also apply, because there was no clinical evidence to support the use of the drug specifically for DSCRT rather than other soft tissue sarcomas.
So, because of the “possible budget risk” Grieve’s application was declined, the letter said.
Isaacs said Pharmac could define strict criteria for access to the drug, which would limit the expense.
“This drug is funded for advanced kidney cancer and is quite commonly used in that setting, meaning New Zealand clinicians have experience with the drug.”
DSCRT is an aggressive and rare tumour that occurs in the abdomen, Isaacs said. MidCentral Regional Cancer Treatment Service, which covers 500,000 people, sees less than one case a year.
The United States-run trial Grieve was treated on in Australia recommended Pazopanib for relapsed disease, as did the clinicians at the Royal Marsden Hospital in London, probably the biggest sarcoma unit in Europe, Isaacs said.
“When we have a rare tumour, we try and follow expert advice, hence my application to Pharmac for funding.
“Soft tissue sarcoma includes a number of different diseases, some of which have been shown to benefit from Pazopanib,” Isaacs said.
James Grieve said he was a realist.
“I know there is no evidence to say (Pazopanib) works, but I know I feel better. I feel a hundred times better. I upped the steroids on the same day. I don’t know what, but something is making the difference.”
Victoria Grieve said she couldn’t afford $40,000 a year to prolong her husband’s life.
With no income for the past nine months the family had been working through their savings.
The chemo didn’t work and the tumours were too extensive for radiation and surgery, she said.
“If we find that this does work, can’t we just give the guy a break and let him spend some more time with his kids?”
Pharmac director of operations Sarah Fitt said she couldn’t comment on individual cases.
“But we do sympathise with the situation this patient is in. In making decisions for individual patients, Pharmac looks very closely at the patient’s individual situation and health need. Pharmac also needs to take into account the wider implications of individual patient decisions, such as the need to be fair to other patients seeking treatment for other conditions.”