An Espanola woman says a drug is available to help people with a rare neuromuscular condition called Spinal Muscular Atrophy, but only if they are under 12 years of age.
Teri Lacey of Espanola is trying to raise three quarters of a million dollars for a one year supply of the drug called Spinraza for her cousin, Tori.
Teri says in June 2017, Health Canada approved the treatment, but the Ontario government, nor the pharmaceutical giant, Biogen, will cover the cost for her cousin’s treatment because she is considered too weak and too old.
Teri says Tori’s parents have remortgaged their property and listed their investments property for sale in an effort to raise the money.
She says, ironically, the Quebec government covers the entire cost, so there is some discussion about moving her cousin there to access the drug.
In the meantime, a Go Fund Me has been set up to ask the public for their help.
Go to:
https://www.gofundme.com/toris-fight-for-spinraza?