Parents fight for Quebec to fund spinal muscular atrophy treatment

The parents of a child with spinal muscular atrophy is fighting for the Quebec government to fund a new drug it recently decided it wouldn’t pay for under the provincial health plan.

Parents of Jessika Parry, 7, say she has benefited from doses of $118K treatment

Eva de Blois said she doesn't want to see her daughter's progress taken away because the government has decided Spinraza hasn't been proven to be beneficial. (Matt D'Amours/CBC)

The parents of a child with spinal muscular atrophy are fighting for the Quebec government to fund a new drug they say has improved their daughter's quality of life. 

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

It was approved by the U.S. Food and Drug Administration last December and seven-year-old Jessika Parry, from Notre-Dame-de-l'Île-Perrot, has been taking it. Her parents say she has greatly benefited from doses of the new drug.

"She's stabilized. She's started to gain movement in muscles that she hasn't been able to use for a long time," Jessika's mother, Eva de Blois said.

Benefits not proven, says government

Quebec's national institute of health and social services excellence (INESSS) decided against the province funding the drug, through the Régie de l'assurance maladie du Québec, because the benefits of it have not been proven.

"In this case, INESSS concludes that the drug does not meet the criterion of therapeutic value, because it has not been demonstrated," spokesperson for the Ministry of Health and Social Services, Catherine W. Audet said.

As part of its decision, the INESSS stated that the duration of the study into Spinraza was insufficient for evaluating the maintenance and improvement of motor functioning in people with spinal muscular atrophy.

Parry's treatment has until now been covered by Biogen, the pharmaceutical company responsible for Spinraza. She was one of the children chosen to receive it for free through an early access program.

"If we lose that now, we'll start regressing again, and it will be the worst feeling to watch Jessika lose everything that she's gained — especially now that she understands what she's losing," de Blois said.

A petition has been launched to pressure the government to reverse its decision and fund the treatment.

The petition has gathered more than 6,000 signatures so far.

With files from Matt D'Amours