MPP Michael Harris calls for Select Committee into rare disease funding

May 27, 2015

Queens Park – Today, Kitchener-Conestoga MPP Michael Harris took a first significant step towards finding solutions for the continuous line of rare disease sufferers who are forced to plead at Queens Park for life-saving and disease-altering medication.

Following a morning news conference with PKU sufferers, MPP Harris asked for unanimous consent to introduce a motion, “respecting the establishment of a select committee to research funding for rare diseases.”

PKU is a rare and inherited brain damaging disorder that can, and does, lead to severe intellectual disability if not treated – extreme restrictive government criteria has meant that, two years after being cleared for managed access, not a single patient has received publicly funded access.

“Premier, do you think it fair that PKU sufferers are forced to come cap-in-hand, like so many before them, to plead your government for the medication that will change and often save their lives?” Harris asked in the Legislature. “People with rare diseases can’t wait, Maddie Vanstone couldn’t wait, the aHUS sufferers who were here over a month ago can’t wait as you make feel-good announcements when they’re facing you, but continue to force them to jump through hoops for access when they leave the building– it’s not right and you know it.”

“Premier, will you join me in doing the right thing, support the creation of a select committee into funding for rare diseases, and end the suffering for those forced to plead with you for life altering medication?”

While the Wynne Liberals refused to allow the motion to move ahead, Harris advised that this was only a first step of many more to come to finally work toward solutions for the small percentage of rare disease sufferers across Ontario.