Apr 22, 2020, 7:18 PM

You may have read about PHARMAC’S decision this week to scrap a lung cancer drug funding plan.

Rare disorders are often more complex and less understood than common conditions, which leads to marginalisation and even dismissal. This is evident in the case of many rare cancers and highlighted by a type called ‘Ros1 lung cancer’. Standard chemotherapy does not work but there is a drug available that shows clear benefit - rated as being highly effective by the European Society of Medical Oncology score system - and yet it’s not available in NZ.

This is the same unacceptable story over and over again for rare disorder medicines. Are their lives worth less?

We have also learned that PHARMAC has decided not to progress funding options for a drug called Spinraza, that can help the devastating rare disorder Spinal Muscular Atrophy, despite continued patient submissions and clinical evidence to show its worth. 

This means a child in New Zealand will die at an average age of 13 months when untreated, compared to those given the medicine at birth (type1) where just under 80% show no clinical manifestations of the disease.

Are we forcing people with rare disorders to play a lottery game with odds never in their favour? In a country with a keen sense of fairness, is that acceptable?

RDNZ have repeatedly asked for a National Rare Disorder Framework to help address this issue and other areas of challenge for this community – please help us raise awareness of this unfair situation in a country based on unity and empathy for our most vulnerable. Sign and promote the National Rare Disorder Framework parliamentary petition now. 


Lisa Foster
Chief Executive

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