'It’s certainly a good step forward': Province to cover drug for those with severe SMA
On Thursday the province announced Manitobans will soon have access to 79 additional drugs through Pharmacare – one of which could change the lives of those living with spinal muscular atrophy.
A medication called Spinraza, which was approved for use in Canada about a year and half ago, is the only treatment for the disease. It’s also one of the 79 drugs that have been added to the province’s drug formulary.
“We are really happy about that, it’s certainly a good step forward,” said Maylia Bodman, whose two-year-old daughter has spinal muscular atrophy.
But the province will only cover it for those with the most severe type of disease called Type 1. This means it’s still difficult for those with Type 2 or Type 3 to get the drug as Spinraza is quite expensive, coming in at $118,000 per dose.
“There’s several with Type 2 and 3 as well. Several children and adults in Manitoba and we are hoping that we can all get treatment,” said Bodman.
Bodman’s daughter, Braelynn, doesn’t produce a protein needed to allow her to voluntarily move her muscles, and over time her muscles weaken. Braelynn is unable to stand or walk and sometimes has difficulty breathing. In the future, it’s possible she could develop trouble eating.
Spinraza, which is administered through an injection into the spine, helps kids with spinal muscular atrophy produce more of the protein they need to use their muscles. The drug is intended to stop the disease’s progression, but clinical trials have shown children getting stronger while on it.
Bodman said the government adding Spinraza to the drug formulary is a step in the right direction and hopefully it will be covered for those with Type 2 and Type 3 spinal muscular atrophy.
“It means the government is starting to recognize that the medication works and that the families need help and that it could save some of these children’s lives with that more severe type,” she said.
Coverage for the additional 79 drugs begins on Jan. 24, 2019.
- With files from CTV's Michelle Gerwing.