Pharmac funding allocation falls far short of what is needed for rare disorders

Rare Disorders NZ is incredibly disappointed about the inadequate funding allocated to Pharmac in this year’s Budget announcement, as it means life-saving medicines that many in the rare disorder community are desperately awaiting access to will not be funded for another year, and lives will be lost as a result. This is despite the call from Pharmac itself to the Government for enough funding to clear its current waiting list.

Pharmac’s medicines budget has been given an additional $191 million in the Government’s 2022 Budget, with $71 million added to this year’s pharmaceutical budget, and $120 million for next year. This funding allocation falls far short of the at least $300 million a year needed for Pharmac to clear its Options for Investment medicines waitlist.

This is a reflection of the wider issue of lack of recognition for the specific challenges people living with rare disorders face in New Zealand. The current Pharmac ‘cost saving’ mindset and lack of a medicine’s strategy or pathway for rare disorders and rare cancers leaves those on the margins out in the cold.

For a future where there is equitable access to modern medicine for our mokopuna, we need a system that is fit for purpose, or the result is not worth contemplating.