St. Catharines man still waits for access to life saving treatment
A 33 year old St. Catharines man is still waiting for access to a drug that he hopes could save his life.
Jared Wayland has a rare degenerative neuromuscular disease called Type 3 spinal muscular atrophy.
There is a drug to treat the disease called Spinraza that is available to patients 18 and younger.
Wayland was hoping that the province would expand its use but a recent review by the Canadian Agency for Drugs and Technologies in Health recommended keeping the age guidelines in place.
He says it is frustrating because other jurisdictions allow the use in adults, "Countries such as Italy, France, the UK and provinces such as Quebec and Saskatchewan have said ok the real world evidence is enough lets get these drugs into people hands. but this governing body that Ontario is choosing to listen to has said no."
Wayland was hoping they would include patients up to 25 years old.
Without government or insurance the first year of treatment with Spinraza costs roughly $700,000.