Local MPP proposes Ontario all-party committee on rare disease treatment
Posted Nov 23, 2015 01:16:17 PM.
Last Updated Nov 23, 2015 01:38:18 PM.
This article is more than 5 years old.
TORONTO – A Progressive Conservative MPP is calling for a provincial all-party committee to look at the treatment of rare diseases.
Michael Harris says people who suffer from rare diseases have endless hurdles, from getting a correct diagnosis in the first place, to specialist referrals, to medication and out-of-country treatment.
He will be introducing a private member’s motion in the new year to strike a committee to tour the province, hearing from experts and people with rare diseases in order to develop a comprehensive strategy.
Health Minister Eric Hoskins applauded Harris for his advocacy on behalf of rare disease sufferers, but wouldn’t say yet if the Liberal government will be supporting Harris’ motion.
Ian Stedman has Muckle-Wells Syndrome, characterized by full-body rashes, fevers and joint pain, and says he didn’t get a proper diagnosis until the age of 32, when he noticed his daughter experiencing similar symptoms and started researching conditions on his own.
He says he and his three-year-old daughter are one of the lucky rare disease sufferers because there is treatment available for them, but he hopes Harris’ proposed committee could find a way to help more people get proper diagnoses.
