 |
Ontario Hansard June 2, 2005
"I know your time is valuable. If I leave you with nothing else, I would like you to know: "(1) Enzyme replacement therapy works. It is effective. "(2) While ERT may be expensive, this should not detract from the fact that it is effective. "(3) I understand that ERT is provided in Ontario for non-lethal Gaucher disease.... Fabry's is a lethal disease. Why is Ontario not willing to provide ERT for lethal cases of Fabry's? "(4) I'm not ready to leave this world yet -- I have too much to give. Just like the other Fabry's sufferers." This government must reorder its priorities to ensure that the most vulnerable of our citizens receive the care they need to sustain their lives. I therefore urge members on the government side of this House to join with me and my colleagues in the Conservative caucus in supporting the funding of ERT for Fabry patients. I have here the undertaking that these folks are asking MPPs to sign. It reads: "On my honour, I hereby undertake to sincerely use all of my abilities and best efforts to obtain full financing/bridge funding of ERT ... for all Fabry's patients in Ontario." I have signed it. I'm going to ask that it be passed along to every member of the Legislature for their signature.
Press Release April 21, 2005 PREMIER'S JUDGEMENT MORALLY BANKRUPT Ontario Hansard March 8, 2005 Access to Health Care Mr. Frank Klees (Oak Ridges): Fabry patients have been abandoned by the Minister of Health and by the McGuinty government. By refusing to fund enzyme replacement therapy, premature death is a certainty for Rick, Sabrina, Danielle, and Fred Sgroi of Richmond Hill, Julia Strauss of Kitchener, Bill Taylor and Carolyn Auger of Ottawa and some 20 other Fabry patients who depend on this treatment to survive. The minister and this government have heard appeals from patients, their families and members of this Legislature to fund enzyme replacement therapy, and the minister and the Premier have turned their backs on those appeals. The minister hides behind the shield of the Common Drug Review process and deflects making a life-saving decision to the expert drug advisory council. This response by the minister is irresponsible, intellectually dishonest and immoral. The minister knows that the common drug review was never intended to make decisions about rare and orphan diseases. It recommends drugs for inclusion in provincial drug formularies based on cost-effectiveness. By relying on the opinion of this panel and the expert drug advisory council, this government is basing the decision to save lives on economics rather than patient need. That is offensive to every citizen of this province. On behalf of Fabry patients and their families, I call on the minister to exercise his authority and his responsibility to extend enzyme replacement therapy today. It is a lifeline that these patients need and they deserve as citizens of Ontario
Klees calls on Premier to assist Richmond Hill residents with life saving treatment February 21, 2005 click here for news release
Klees quoted in interview with Roy Green of the Richmond Hill Liberal Newspaper Click here
|
||
© 2008 Frank Klees, M.P.P. All Rights Reserved |
