$120K spinal-disorder drug to be covered by Quebec's public health insurance

A drug treatment, which can cost more than $300,000 per year for patients with spinal muscular atrophy, will be covered by Quebec's public health insurance program, the provincial health minister said Wednesday.  

Manon Nadeau, whose 24-year-old son has Type 3 spinal muscular atrophy, said she cried when she learned about the funding. 

The drug, Spinraza, costs $118,000 per dose and a minimum of three doses are needed annually. Seven are needed in the first year of treatment alone.

"This is the best [Christmas] gift we could hope for," Nadeau said.

Nadeau's son has difficulty walking up and down stairs, falls often and is unable to get up on his own. His Spinraza treatments are expected to begin in the new year.

Spinraza helps increase the production of the protein that maintains the survival of motor neurons, which control muscle activity. People with spinal muscular atrophy, a rare disorder, lose those neurons and often have an early death

'These people have been fighting for a long time'

Pediatric hospitals in Montreal, such as Sainte-Justine and the Montreal Children's, are already preparing to administer the medication.

"We wanted to announce this right away because it's very stressful for the families, for the people who have this illness," Health Minister Danielle McCann said Wednesday. "These people have been fighting for a long time."

A petition was launched last year calling on the provincial government to fund Spinraza treatments. But Quebec's national institute of health and social services excellence (INESSS) initially decided against it, saying the benefits had not been proven.

The INESSS, however, has since completed an evaluation that demonstrates the medication has a positive impact on the health of people with spinal muscular atrophy, McCann said.

Her ministry, she added, will provide more details when its receives the final INESSS report on January 14.

The drug will cost the province between $20 and $25 million annually, according to Health Ministry estimates. Spinraza will be funded through the Régie de l'assurance maladie du Québec (RAMQ). 

Quebec could benefit from a rebate through the pan-Canadian Pharmaceutical Alliance, an organization that seeks to negotiate lower prices for publicly funded drug programs.