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stoufjville suntribune thursday april 21 2005 11 premier hiding behind drug review we can asthma p call the lung association lung association this message brought to you as a cpjriinunity service of the c6nornisl sunsuh-tribuhe- from page 1 therapies introduced replagal an enzyme replacement therapy used to treat fabry mr irwin vol unteered for clinical trials and noticed a marked improvement almost immediately i was feeling much better and more confident and had good energy with the drug the quality of my life improved replagal and a competitors fabrazyme were approved by health canada in early 2004 the twice monthly infusions valued at 25000 were supplied free of charge to mr irwins doc tor at markham stouffville hospital by the pharmaceutical company until last february transkaryotic withdrew its complimentary supply when it couldnt get an indication whether the province would include the product in its drug benefits program an initiative that helps pay for costly drugs outside traditional provincial and private drug plans i was cut off feb 16 and im now starting to digress to my preinfusion status mr irwin said im getting vertigo attacks pain is increasing and my whole history with fabry has been strokes many strokes my biggest problem of course is that i now have to sit and wait for the next one unwilling to give up hope mr irwin optimistically began a letter writing and telephone campaign to gain answers to his ample suggestions including interim federalprovincial bridge funding to make the drug avail able to victims of fabry i wrote and called the premier health minister george smitherman my mp and mpp and got absolutely zero response the only one who got back to me was oak ridges conservative mpp frank klees mr irwin contends the province continues to dally on funding approvals because fabry affects a small segment of the community and the price tag is heavy 11111111111 k is -w-v- gerry irwin with medication u can make use of what time is avail able man with fabry disease said i know for a fact that there are other drugs that cost as much and have been approved by ontario he said the drug i need is approved and available and the province still plays god mr klees concurs i believe its unconscionable that the government is turning their backs on people with fabiy disease he said the govern ment has a moral responsibility to respond to these patients at what point does the premier have the right to say yes to one group of patients and no to another klees supportive this government has col lected 28 billion in new health taxes wheres the money going its frustrating in the house the government looks at a 450 mil lion hotel casino in windsor and in the same afternoon cant tell fabry victims if theyll get help no one can justify that health ministry spokesper son dan strasbourg said ontarios drug benefit program does consider listing specialty pharmaceuticals based on national common drug reviews the program does help defray the costs of high price drugs in relation to an individ uals income he said the fabry drugs are still under common drug review during legislative assembly question period april 6 premier dalton mcguinty responded to kitchenerwaterloo mpp elizabeth witmers query whether the fabry drugs would be funded by the province mr mcguinty said all provinces and territories have agreed to adhere to a common drug review provided by the canadian coordinating office for health technology assessment an independent national organization that reviews approved pharmaceuti cals effectiveness from a clinical and financial perspective as drug companies come forward and propose that we add an additional drug to the list of those we publicly sup port we think its important to find out whether they are as efficacious as they hold them to be the premier said we have a common drug review again we have a process its not an easy one but i think its the appropriate one and the responsible thing to do common drug reviews of replagal are not promising the jury is still out on genzyme canadas fabrazyme based on data provided by the canadian expert drug advisory committee the assess ment agency recommended replagal not be listed last november citing in part clini cal trial outcomes were not impressive and the perpatient treatment cost is 239200 per year excluding pharmacy markups review of fabrazyme contin ues and final recommendations are due within weeks premier mcguinty is hiding behind the cdr common drug review mr irwin said i would love to see everyone with fabry have access to the drugs its important to us and important to the next generation so we can minimize impact on our chil dren if and when funding comes through i would be delighted i could then get back to the infu sions and make use of what time is available rms rfus 3by fk- sm hrs v spring if ings m ilfmiiiliiltl lilt iprsfflf4 r lly at volvo unionville 44point inspection plus oil and filter change for example check engine performance clutch 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