Ontario patient with SMA reacts after government agrees to cover life-changing drug

Ontario SMA patient begs for her life
WATCH ABOVE: Ontario families are putting pressure on Health Minister Christine Elliott to fully fund life-altering drug for all people suffering from Spinal Muscular Atrophy or SMA. The drug, Spinraza, has been approved for everyone in Quebec and Saskatchewan but is limited for SMA patients in Ontario. Tom Hayes reports. (June 3)

Clearing her throat to start the interview, it’s easy to tell Tori Lacey’s voice is stronger.

“I’ve definitely been noticing an increase in strength for sure,” the 21-year-old told Global News.

“It’s like this 200-pound weight has been lifted off our shoulder,” added Tori’s mother, Tracy Lacey.

READ MORE: 21-year-old Ontario patient with SMA granted access to costly ‘miracle drug’ coverage

The family was recently told they would have fully funded access to the miracle drug Spinraza.

Tori, who was diagnosed with the rare fatal disease spinal muscular atrophy (SMA) as a baby, appeared at Queen’s Park back in June to plead for her life. The focus was on Health Minister Christine Elliott, who was telling Ontario patients with SMA and their families that the province was reviewing the drug.

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The protest came as Quebec and Saskatchewan had already given full access to Spinraza.

The Lacey family had already remortgaged their property to pay for the first four treatments with a cost of more than $400,000.

READ MORE: Life-changing drug Spinraza still not covered for many Canadians with spinal muscular atrophy

Tracy said the improvement in her daughter’s health has been noticeable already.

“We’ve definitely seen an increase in strength. We can wait to see what keeps coming,” said Tracy.

“I’m able to work eight hours a day, which I couldn’t do before. I definitely have increased movement in my hands,” added Tori.

READ MORE: Families of patients with SMA meet with Ontario health minister, hope ‘miracle drug’ will get funded

The province has approved full funding for Tori at a cost of roughly $125,000 per dose for the next year. After that time, Tori will be reassessed for further treatment.

Meanwhile, Tori said she still has high hopes though.

“I’m looking forward to finishing university, looking forward to my career, and looking forward to travelling the world,” she said.