Families of patients with spinal muscular atrophy (SMA) say they have new hope that the “miracle drug” Spinraza will soon be available to all SMA patients in Ontario after a face-to-face meeting with Health Minister Christine Elliott.
“She said she’s going to do everything she can,” said Theresa Van Frassen, the mother of 21-year-old Rebecca Van Franssen — a patient with SMA.
“I think it would be difficult to look someone in the eye and give them that promise and not follow through.”
Spinraza has been proven to stop the progression of spinal muscular atrophy, a disease that deteriorates a person’s muscles until they can’t breath.
Each dose of the drug costs $125,000 and six doses are needed in the first year alone.
When asked about Saskatchewan and Quebec fully funding all SMA treatments for patients, Elliott said, “We have a process that we have to follow in Ontario where we have to be fiscally responsible but we also want to help families.”
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Elliott told the Van Fraassen family they will hear a decision on fully funding the miracle drug within two weeks.
The announcement comes a day after NDP MPP Chris Glover, Rebecca and 21-year-old Tori Lacey, another patient with SMA, appealed for help at Queen’s Park from the Ontario government.
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