Funding for rare cancer out of reach

18:01, Dec 07 2013
Christchurch man Andrei Martin
FIGHTER: Christchurch man Andrei Martin, pictured with his wife, Abby, and daughter, Alice, is suffering from a rare form of cancer – neuroendocrine tumours or NET.

About 250 cases of the rare cancer that killed Apple founder Steve Jobs are being diagnosed in New Zealand every year, according to a foundation supporting those with the illness.

But funding for the treatment, believed to be a "game changer" for the disease, continues to be out of reach, despite it being recognised as effective in other parts of the world.

The newly registered Unicorn Foundation is supporting an Auckland oncologist's application for funding to bring Peptide receptor radionuclide therapy (PRRT) to NZ hospitals.

Christchurch man Andrei Martin, whose story featured in the Sunday Star-Times last week, has a rare neuroendocrine tumour - or NET.

The 38-year-old father has chosen to travel to the Peter MacCallum Cancer Centre in Australia at a cost of $60,000, because PRRT is not available or funded in this country.

The Ministry of Health told Martin's oncologist in Christchurch that PRRT was "investigational" and "not routine practice", without "proven efficacy through appropriate clinical trials" and therefore wasn't eligible for funding from its high-cost treatment pool.


Siobhan Conroy, the executive director of the Unicorn Foundation charity, said Martin's story was "sadly" all too common and New Zealand "desperately" needed to focus on lack of funding and awareness of the disease.

The foundation is supporting Auckland oncologist and research fellow Dr Ben Lawrence's application for funding to bring PRRT and GaTate PET/CT scans, used in diagnosis, to NZ.

Conroy said the GaTate scan was "extremely effective" at picking up NET tumours and was "badly needed" in NZ, along with PRRT.

"Patients have to pay over $50,000 for the cost of the treatment and ongoing travel to Melbourne. It doesn't have to be this way," she said.

Lawrence, who works at Auckland City Hospital, said PRRT had been around for about 10 years. It had been "recognised internationally" by clinicians as the standard of care for five of those.

Sunday Star Times