22 April 2020 - 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?

Read Rare Disorders NZ press release