Posted by Michael Wonder on 02 May 2019
SMA petition: family forced to move to Australia to get daughters treated
2 May 2019 - A family have moved to Australia in order to get their daughters the treatment they need.
It comes as a petition calling for PHARMAC to fund a drug that treats spinal muscular atrophy (SMA) was presented to Parliament yesterday.
The petition signatories want PHARMAC funding for Spinraza, the only drug that can slow the effects of SMA and which can cost as much as $1 million a year.
Gavin Old has two daughters with SMA and his family has had to move to Australia in order to access Spinraza.
