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Rare Disease Day highlights continued struggle for support

February 28, 2017

FOR IMMEDIATE RELEASE

February 28th, 2017

 

Rare Disease Day highlights continued struggle for support

Sufferers still in dark a year after Minister’s rare disease working group announcement

 

QUEEN’S PARK – Rare Disease Day may only come once a year, but sufferers’ need for support goes well beyond annual photo-op lip service announcements from the Wynne Liberal Government.

 

That from Kitchener-Conestoga MPP Michael Harris as he joined patients and their families today at Queen’s Park to recognize Rare Disease Day and mark one year since the Minister announced a Rare Disease Working Group whose details remain a mystery.

 

“A year after watching the Minister of Health and his Liberal colleagues defeat my motion for a rare disease strategy in favour of a government ‘working group’ proposal, we continue to await action,” said Harris. “Today we are here again at Queen’s Park with little to show for the year patients have been forced to suffer and wait.

 

“While government was quick with “working group” promises when patients were on their doorstep last year, the Wynne Liberals have a habit of only acting when it’s in their best interest – after forcing sufferers to beg for their lives in this Legislature and the cameras are turned on….when the cameras turn off, so do the Liberals.”

 

In an effort to bring some needed transparency to the process, Harris tabled a motion yesterday 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.”

 

“It’s all about choices and government’s priorities,” Harris intoned. “Look this government prioritizes and makes choices everyday to support billions for gas plant relocations, or to support luxury Tesla owners with $10,000 rebates per electric car, it shouldn’t be too much to ask to make support for rare disease sufferers a priority.”

 

Harris acknowledged that while efforts to highlight rare disease last year have led to government’s announcement of a clinic for EDS sufferers, there are hundreds of thousands other rare disease sufferers whose plight continues to be ignored.

 

Harris says 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 needed support.

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For further information contact: Rob Willett | 519-404-4052 | rob.willett@pc.ola.org |