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…
Tag: Spinal Muscular Atrophy
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. ‘ });…
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…
NDP MPP, patients with SMA call on Ontario to cover ‘miracle drug’ to treat rare disease
It’s been called a miracle drug that would help sufferers of a rare, debilitating disease reverse its degenerative effects on the body. But Spinraza also costs hundreds of thousands of dollars per year. That is why patients with spinal muscular…
Ontario SMA patient begs for her life
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…
Miracle drug access denied for SMA patient
April 3 2019 6:26pm Twenty-one-year-old Tori Lacey has been hoping for a drug to stop the progression of her spinal muscular atrophy. The drug Spinraza is now available, but not for this young woman as OHIP will not cover the…
Ontario woman with rare disease forced to pay hundreds of thousands to cover ‘miracle drug’
For 21 years, a Whitby woman and her family have been in and out of hospitals, fundraising and hoping for a breakthrough that would help her in her fight against a rare disease. The road has been long and it’s…