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

SMA drug funding approved, but some Ontario patients could be excluded
WATCH ABOVE: Patients with spinal muscular atrophy have been fighting for access to a miracle drug called Spinraza. But as Tom Hayes reports, the expanded help may not be coming to those who led the fight. (June 12)

It was a detailed email, but the word that jumped out was “approved.”

“We’re just about to open four bottles of champagne,” said Tracy Lacey, mother of 21-year-old Tori Lacey.

Tori, who has spinal muscular atrophy (SMA), got the best news of her life after she was approved to receive the miracle drug that could save her life.

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

Tori and her family have been battling the Ontario government for access to Spinraza, a wonder drug that promises to stop the progression of muscle deterioration that ultimately claims the life of SMA patients.

The drug costs approximately $125,000 a dose and patients need six doses in the first year alone. Every subsequent year requires four doses.

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Ontario had put restrictions on access to Spinraza unlike other provinces such as Quebec and Saskatchewan.

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

The provincial government had approved access for patients up to the age of 18 in all categories of SMA patients, but Tori missed the cutoff by just a few years.

After intense pressure from SMA families applied to Ontario Health Minister Christine Elliott along with news reports, the government opened the door to access to Spinraza by saying that over 18 cases would be handled on a case-by-case basis.

Tori applied for assistance and after weeks of anxious waiting, she was informed on Friday that she has been approved for treatment.

“It really is a life-saver. I’m looking forward to getting stronger,” said Tori.

READ MORE: Woman granted ‘miracle drug’ coverage after pleas in media, at Queen’s Park

Tori joins 19-year-old Rebecca Van Fraassen, who was approved for Spinraza treatment four weeks ago. Both young women made an emotional plea at Queen Park, begging for their lives. Both families had also spent years fundraising millions of dollars for a breakthrough such as Spinraza.

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Meanwhile, Tori said she hopes the good news will spread.

“I’m really hoping that this means great things in the SMA community right across Canada. I’m hoping that every province is going to follow suit,” she said.