24 February 2017 - Alex Chiabai has been living with the effects of Duchenne muscular dystrophy, a genetic disease that weakens and eventually destroys muscles, for most of his young life. 

The 16-year-old now relies on a wheelchair to get around, but he still has good upper-body strength, something his mother attributes in part to deflazacort, a steroid that helps keep some of the disease’s nefarious symptoms in check.

Deflazacort, a decades-old generic drug, is one of the front-line treatments for Duchenne muscular dystrophy (DMD) and patients across the country depend on it to slow the progressive muscle weakening, as well as to help keep their lungs and hearts strong, and weight down, which are some of the other difficult symptoms of the disease. Despite this, deflazacort hasn’t been approved in Canada to treat DMD or any other medical condition. Patients must apply to Health Canada’s Special Access Program, which is designed to help patients with serious diseases get their hands on medications that are not available in Canada, usually through importing from other countries.

Read Globe and Mail article