Signatures 908 total
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Name: Philippe Bedard on Aug 12, 2008Comments: It's about time that administrators woke up and smelled the coffee for the citizens of Ontario that live with rare diseases. The usual population-based health outcome metrics simply don't apply. If we're serious about upholding the principles of justice and equality that underlie the Canadian health care system, we need to put our money where out mouth is and afford Ontarians with rare diseases the access to quality-of-life enhancing treatments that they deserve.Flag
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Name: Alex Austin on Aug 12, 2008Comments: I am petitioning to you in support of my good friend Simon Ibell who is one of the few extremely unfortunate citizens of this province who are afflicted with MPS II Hunter Syndrome. I have known Simon since early childhood and have seen the debilitating effects of this disease. From his earliest years he has known much pain and suffering, finding extreme difficulty and frustration in the ordinary activities of life. Recently he has seen a remarkable improvement in his health thanks to a weekly enzyme replacement infusion of Elaprase. This treatment stops the progression of MPS II Hunter Syndrome. Unfortunately Canadians with rare diseases, such as MPS II, are fighting a constant battle when it comes to funding of treatments like Elaprase, as well as providing funding for research into new treatments/cures: approval does NOT guarantee funding. Even though Elaprase is approved by Health Canada for availability, it far from guarantees a Canadian MPS II patient access to the drug. The Ontario Ministry of Health refuses to pay for treatment, currently Simon is receiving treatment on a compassionate use basis from Shire, the pharmaceutical company. However the real tragedy is the five other young patients in Ontario are not receiving Elaprase at all so MPS II progresses in their bodies. Please consider their plight and those of other Canadians who are afflicted with rare disorders for which there are treatments, but not the economies of scale or visibility of scale to make them poignant to those who administer policy. Sincerely Alexander AustinFlag
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Name: David Wilson on Aug 12, 2008Comments: Simon has been a great friend of mine for 15 years and he has never complained regarding his disease or the political conditions surrounding his treatment. However, this is a great push by Simon and Mr. Nash to change the current condition. I give them my full support for Simon and any others in Ontario suffering from the same disease. Good luck.Flag
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Name: Tiffany Pritchett on Aug 12, 2008Comments: I fully support this petition. Simon has been a person that will always be dear to my heart. With the high cost of treatment, so many families in the US depend on the gov't and special prorgrams for assistance - and I cannot imagine not even having the option for treatment.Flag
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