October 28 2019 6:07pm Eva Batista was born with Spinal Muscular Atrophy and her family is hoping to raise $2.8 million to get access to drug currently only available in the U.S. Tom Hayes has more ‘ }); } else…
Tag: SMA
Room to grow: Run raising funds for Spruce Grove girl diagnosed with genetic muscle disease
Like most 14-year-olds, Pyper Whitecotton is looking for some independence. The small mobile home in Spruce Grove she shares with her mom, Heather Forsyth, is getting a little too cramped for the duo. Pyper was diagnosed with Spinal Muscular Atrophy…
Ontario patient with SMA reacts after government agrees to cover life-changing drug
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…
21-year-old Ontario patient with SMA granted access to costly ‘miracle drug’ coverage
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…
Life-changing drug Spinraza still not covered for many Canadians with spinal muscular atrophy
For several hundred Canadians with spinal muscular atrophy (SMA), Spinraza is a drug that means the difference between life and a slow, debilitating death. But in many parts of Canada, the incredibly expensive drug is not covered by provincial drug…
Woman granted ‘miracle drug’ coverage after pleas in media, at Queen’s Park
A 21-year-old woman with spinal muscular atrophy (SMA) has been granted eight months’ worth of provincial health coverage for an expensive “miracle drug”, her family says. The news comes less than one month after their pleas for coverage were taken…
SMA drug funding approved, but some Ontario patients could be excluded
June 12 2019 6:13pm Patients with spinal muscular atrophy have been fighting for access to a miracle drug called Spinraza. But as Tom Hayes reporters, the expanded help may not be coming to those who led the fight. ‘ });…
Ford government expands coverage for ‘miracle drug’ Spinraza, but with age cap
The Ontario government has announced it will cover the costs of a “miracle drug” used to treat spinal muscular atrophy (SMA) for Ontarians with all forms of the disease up until age 18. In a statement, Health Minister Christine Elliott…
Renewed hope for provincial funding of ‘miracle drug’
Families of patients with spinal muscular atrophy met with Health Minister Christine Elliott as they continue to push for Ontario government funding of Spinraza, which has been approved for everyone in Quebec and Saskatchewan but is limited for SMA patients…
Families of patients with SMA meet with Ontario health minister, hope ‘miracle drug’ will get funded
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…