Cancer patients go to Aussie for treatment

‘‘Because it is such life-changing treatment, we really believe we should be funding it; first of all to send our patients to Australia, but longterm to see it established in New Zealand.’’ Siobhan Conroy, Unicorn Foundation

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.

Auckland woman 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 for NET cancer and to campaign for better treatment.

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

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

NET tumours can grow anywhere in the body – they’re hard to diagnose and hard to treat.

Peptide receptor radionuclide therapy, or PRRT, is a form of targeted molecular therapy used in patients with NET cancers. It attracts and attaches to tumour cells – killing them. But at a cost of about $50,000 for a full course, plus airfares and accommodation costs to travel to Australia to receive it, the treatment is out of reach for many. It is no cure – it buys time.

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. ‘‘I went through some radiation therapy on the primary tumour on my tailbone. That was quite successful but the cancer had spread to my liver and lymph nodes.’’

Three years ago, Holmes underwent a liver resection, where doctors removed part of his liver to get at a large tumour there. Doctors extracted the bulk of it, but not all. 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.’’

Holmes self-funds the treatment, which includes at least four trips to Melbourne. He hoped an upcoming scan would show positive results, and said doctors were positive his tumours had shrunken a bit.

Holmes said he was in a slightly fortunate position where friends had raised about $30,000 for him on Givealittle, he had friends to stay with in Melbourne, and his work supported his airfares and leave. He also had medical insurance which did provide 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.’’

Conroy said the treatment had the clinical data to back it up and Australians have funded it for a number of years. But money was not the only barrier. The expertise required was highly specialised, and did not exist in great enough numbers in New Zealand.

‘‘Because it is such life-changing 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.’’

A centre of excellence in this area of treatment could also have benefits for other patients, Conroy said.

The treatment was also being investigated as a treatment for prostate cancer and pancreatic tumours. She estimated it could cost about $2m to establish the treatment in New Zealand. Conroy said the foundation expected about 50 patients would require the treatment in the first year. While about 2000 people were battling NET cancer, not every patient would need the last line PRRT treatment as the cancer was slow in developing.

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.

‘‘If Pharmac did receive a funding application for PRRT, we would consider it as part of our normal process and work with other parts of the health system to determine the potential resource requirements and impacts for delivery of this treatment.’’ O’connor said he was happy to help Conroy with the petition, as her electorate MP.

‘‘I think there’s a whole range of cancers and a whole range of treatments, but there’s certain sectors that aren’t all that well-known. And neuroendocrine is certainly one of them.

‘‘I think what Siobhan and Unicorn are doing is bringing a greater awareness, and this particular treatment is pretty much the gold standard approach against this – I think it’s really important that Pharmac considers this.’’

Health Minister Jonathan Coleman and O’connor said the current situation, where patients were travelling to Australia for a highly specialised treatment, was quite different to the situation under previous Labour and National Governments where patients were travelling across the ditch for more general treatments.