Rare Disease Needs Fair Treatment

MPP Michael Harris and President of Alpha-1 Canada Mimi McPhedran discuss the challenges people with rare disease face getting treatment in Ontario, January 27, 2016. (Photo by Maureen Revait)

Members of Alpha-1 Canada are hoping a private member’s bill can help improve access to life saving treatments.

MPP Michael Harris from Kitchener-Conestoga would like the provincial government to strike a select committee into rare disease treatment in Ontario.

“That would travel the province and hear from experts in the rare disease community to come up with a strategy and recommendations for the government to better assist those that have a rare disease,” says Harris.

Mimi McPhedran who suffers from antitrypsin deficiency says people with rare diseases often have more hurdles to climb then someone diagnosed with more common diseases like cancer.

“Most patients have to go to Queen’s Park present themselves on the stairs and plead for their lives for the treatment, and this we think is extremely inequitable,” says McPhedran.

The only known lung treatment for Alpha-1 is not covered by the Ontario government and can cost up to $100,000 annually.

The private member’s motion will be debated in legislature on February 25.