On the eve of Rare Disease Day sufferers continue to await Wynne actionFebruary 27, 2017
FOR IMMEDIATE RELEASE
February 27th, 2017
On the eve of Rare Disease Day sufferers continue to await Wynne action
Promised ‘rare disease working group’ details remain secret 1 year later…
QUEEN’S PARK – A full year after watching the Minister of Health rally his Liberal colleagues to defeat MPP Michael Harris’ motion for a rare disease strategy in favour of a government ‘working group’ proposal, sufferers continue to await action.
“Sufferers were understandably frustrated last Rare Disease Day when the Wynne Liberal government defeated my motion, but were at least hopeful for the promise of a rare disease working group,” Harris noted earlier today. “Today we stand here again in this Legislature with little to show for the year patients have been forced to suffer while awaiting action.”
In an effort to bring some needed transparency to the process, Harris today tabled a motion calling on the Minister to, “report on the progress of the government’s Working Group on Rare Diseases on a bi-annual basis.”
The motion indicates that the reports should include, “the membership of the Working Group; the schedule of meetings; the agenda for each meeting; a synopsis of items discussed and meeting outcomes since the last report; and expected outcomes and milestones for the coming year.”
“I warned members of the concerns related to the lack of transparency government chose when they opted for a working group that makes decisions behind closed doors,” recalled Harris. “One year after the defeat of my private members’ motion for an open and public process for rare disease treatment, we see those concerns borne out as we mark another Rare Disease Day without any idea as to what government plans to do for sufferers.
“The Minister just can’t come out here once a year to recognize Rare Disease Day, but then fail to recognize his lack of action for sufferers.”
Harris says that despite the ongoing government stalling, he’s hopeful the continued campaign of pressure through his http://treatraredisease.ca/ website and at Queen’s Park will help sufferers move closer to the treatment they deserve.
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