Battle to fund treatments
PATIENTS with a rare form of cancer are still fighting to gain funding for a ‘‘gamechanger’’ treatment.
About 250 new cases of neuroendocrine tumours (NETs), the slow-growing cancer that killed Apple founder Steve Jobs, are diagnosed in New Zealand each year.
The targeted peptide receptor radionuclide therapy (PRRT) is not funded here despite it being a recognised treatment in other parts of the world.
Dr Malcolm Legget was diagnosed three years ago with a pancreatic NET that had spread to his liver.
Learning that he had an uncommon cancer with no direct access to the latest tests and treatment was terrifying, he says.
‘‘It’s like living in a black hole with questions eating away at you.
‘‘Waiting and not knowing is worse than being told you have terminal cancer.’’
The Parnell cardiologist had to find upwards of $50,000 to travel to the Peter MacCallum Cancer Centre in Australia for a specialised scan and treatment.
The cost puts it out reach for many patients.
Legget is now supporting others suffering with the cancer as chairman of Unicorn Foundation New Zealand.
The newly registered charity is backing an Auckland oncologist’s application to fund the equipment needed to offer the therapy in hospitals here.
‘‘This treatment was an absolute game-changer for me,’’ he says.
‘‘It seems to us almost unethical that people in New Zealand can’t access this scan and we want to change that by hopefully raising enough money to get the equipment over here.’’
Unicorn Foundation New Zealand founder Siobhan Conroy says the specialised NET scan is desperately needed in order for doctors to
of accurately diagnose and treat patients. The charity hopes to raise $300,000 to establish the scan and cover the cost for 100 patients over the next two years.
‘‘Beyond this our hope is that the Government will see the value and step in,’’ she says.
Conroy had a number of surgeries to remove NETs, including one to remove 12 centimetres of her pancreas four years ago.
The Glen Innes mum has a hereditary gene, Multiple Endocrine Neoplasia Type 1, predisposing her to the cancer.
The gene has a 50 per cent chance of being passed on.
Conroy is now cancer-free but is tested every six months to check for new tumour growth.
She says being aware she is predisposed to this cancer is a ‘‘gift’’ as it gives her the best chance of catching the tumours early. Others aren’t so lucky.
‘‘A comment I often hear from patients is they wish they had been diagnosed with a more common cancer because there is awareness, there’s access to treatments and there’s funding there – not for every cancer but more common cancers definitely.
‘‘Patients feel that there is an injustice there and that’s a big part of what we’re trying to do is make it equal.’’
Dr Malcolm Legget and Siobhan Conroy hope to raise awareness about neuroendocrine tumours (NETs), a rare form of cancer.