Cancer patients petition Pharmac

"Because it is such life-changing treatment, we really believe we should be funding it." Unicorn founder Siobhan Conroy

Roughly a patient a day is diagnosed with the slow-growing neuroendocrine (NET) cancer, and up to 50 at any given time are forced to travel to Australia for treatment.

The Unicorn Foundation is petitioning drug purchaser Pharmac to fund patients to receive treatment in Australia in the short term, and set up a funded treatment centre in the long term.

Aucklander Siobhan Conroy has a genetic pre-disposition to the cancer, and has had multiple tumours removed in the past. She is tumour-free, but set up the Unicorn Foundation to raise awareness of NET cancer and to campaign for better treatment.

With more than 12,000 signatures and the backing of her Tamaki MP and chairman of the Health Select Committee, Simon O’Connor, Conroy hoped Pharmac would consider it.

NET tumours are hard to diagnose and hard to treat.

Peptide receptor radionuclide therapy, or PRRT, is a form of targeted molecular therapy, which is performed by using a small amount of radioactive material combined with octreotide injected into the patient’s bloodstream.

But at a cost of about $50,000 for a full course, it is out of reach for many who need it. It is no cure, it buys time. But in a number of cases, a considerable amount.

For Chris Holmes, the treatment has been the last line of defence against his terminal diagnosis.

He was diagnosed with the cancer about six years ago, and was immediately recommended for palliative care.

‘‘Which I didn’t really understand, but it basically means that you’re dying soon - it’s about keeping you comfortable,’’ he said.

Subsequent radiotherapy and surgical interventions kept him stable.

‘‘About a year ago, I started to see a little bit of growth again in the liver, so I went back to Melbourne for some more treatment and new scans and the recommendation was PRRT.’’

He was in a comparatively fortunate position where friends had raised about $30,000 for him, he had friends to stay with in Melbourne, and his work supported his airfares and leave.

He also had medical insurance, which provided cover for a reasonable portion of his treatment costs.

‘‘I think as much as I’ve had it, and I think I’ll benefit from the treatment in terms of prolonging my life, it’s just a shame that it’s not available to a lot of people,’’ Holmes said.

Conroy said the treatment had the data to back it up, but money was not the only barrier. The expertise required was highly specialist, and did not exist in great numbers in New Zealand.

‘‘Because it is such lifechanging treatment, we really believe we should be funding it; first of all to send our patients to Australia, but long term to see it established in New Zealand.’’

She estimated it could cost about $2 million to establish the treatment in New Zealand. The foundation expected about 50 patients would require the treatment in the first year.

It was an issue Pharmac was already working with specialists on. Director of operations Sarah Fitt said no funding application had been received for PRRT.

‘‘Pharmac is aware of the interest in this treatment and we will be seeking expert advice on its use from our cancer subcommittee in August 2017.’’