Posted by Michael Wonder on 02 Jan 2020
Toronto parents of baby needing $2.8 million drug turn to Swiss drug maker's dose lottery as a last resort
31 December 2019 - Critics call on Ottawa to improve access to expensive drugs that treat rare diseases.
Lying on the couch by the Christmas tree in her Toronto home, four-month-old Eva Batista begins to cry as her mom places a suction mask over her face to remove excess saliva building up in her throat.
Eva has spinal muscular atrophy, a rare, potentially deadly genetic disorder that weakens her muscles, making it difficult to breath at times or eat without the aid of tubes.
The only possible cure, a gene therapy called Zolgensma, costs $2.8 million for a one-time dose.
