Posted by Michael Wonder on 04 Mar 2019
Panel backs provincial funding for expensive drug to treat rare disease. But only for children.
4 March 2019 - Provincial governments should expand public funding for one of the world’s most expensive medications to cover more children with a rare neuromuscular disorder, but they should not pay for the drug for teenagers and adults, a new report says.
The expert committee that advises most provinces on whether to pay for new drugs concluded that the scientific evidence for Spinraza was too weak and inconclusive to justify public funding for anyone over the age of 12 with spinal muscular atrophy, a genetic disease that is fatal in some cases and debilitating in others.
The sticker price for Spinraza works out to $708,000 in the first year and $354,000 every year thereafter.
