2 Aug 2021

Family split up because of Pharmac funding decision

From Morning Report, 7:55 am on 2 August 2021

A Tauranga couple have been forced to split up their family so their daughter can access treatment for Spinal Muscular Atrophy in Australia - treatment that Pharmac won't fund in New Zealand.

They are among about ten New Zealand families who have moved countries since 2018 to access treatment for SMA.

It comes as the Human Rights Commissioner calls on Pharmac to urgently review funding for the SMA drug Spinraza saying the agency's assessment of the drug is too narrow and doesn't account for the true costs to society.

Investigative Journalist Guyon Espiner reports