Quebec approves ‘life-changing’ treatment for patients with Type 2 and 3 spinal muscular atrophy

The Quebec government has announced that spinal muscular atrophy (SMA) Type 2 and 3 patients will now have access to Spinraza.

In 2017, the drug Spinraza had been approved by Health Canada and in October 2018, provinces announced that they would cover the cost of the treatment for those with Type 1.

READ MORE: Defying the odds and climbing mountains to advance SMA research

As for those with Type 2 and 3, it is up to each province to decide if it wants to cover the drug under its own provincial health plan.

Spinraza costs hundreds of thousands of dollars per year.

“It’s indescribable,” said Rosa Mariani, Cavallaro’s mom. “I can’t even put into words the happiness, the relief.”

“All of our hard work has been noticed and rewarded — we’re so happy.”

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Spinal muscular atrophy is a devastating degenerative disease that affects one’s nervous system, specifically the part that controls muscle movement.

In November, Global News spoke with families with children affected by the disease, who were lobbying the new Coalition Avenir Québec government to get access to the drug.

READ MORE: Families fighting for ‘life-changing’ treatment for children with spinal muscular atrophy

Quebec Health Minister Danielle McCann had said that she was waiting on a recommendation from Quebec’s national institute of health and social service excellence (INESSS) regarding Spinraza and specifically Type 2 and 3 patients.

On Tuesday, McCann announced that she had received the report and as a result, has decided to add Spinraza, for Type 2 and 3 patients, to the list of medications covered by the province.

READ MORE: ‘A price tag on kids’ lives’: Peterborough parents raise awareness of costly drug for daughter’s rare disease

“The expansion of coverage for this drug is part of our many efforts to improve access to services for all users of our network,” said McCann in a press release. “We are committed to providing all Quebecers with the care and services best suited to their needs and this includes access to proven medications to help them live healthier lives.”

The Cavallaro family says though this treatment will hopefully help change Sammy’s life and the lives of many others — this is not the end of their fight.

“This is a treatment, not a cure,” said Mariani.

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“The fight doesn’t end here,” added Cavallaro.