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Wilson questions government over funding for lifesaving cystic fibrosis medication

(February 26, 2020) Today, Simcoe-Grey MPP Jim Wilson was joined at Queen’s Park by his constituents Jamie Larocque, Sasha Haughian, Beth Vanstone and Madi Vanstone along with cystic fibrosis advocates from across Ontario to question the government on the province’s willingness to fund lifesaving medication to treat the disease. Wilson also held a press conference earlier in the day with Dr. Elizabeth Tullis, Director of the Toronto Adult Cystic Fibrosis Clinic at St. Michael’s Hospital, and Chris MacLeod, Chair of the Canadian Cystic Fibrosis Treatment Society.

“I first raised this issue five years ago when I was approached by Beth Vanstone from Beeton who at the time was seeking funding for a drug called Kalydeco for her daughter Madi.  Madi eventually received the medication and is now doing well, but there are multiple variations of the medication to treat this disease depending on the gene mutation of each individual patient,” said Wilson. “Each drug must go through its own approval process, which can take years under the current drug approval system.”

Wilson’s request is to improve the rare drug strategy process and in the meantime help people who need access to medication now, like two young boys from Tottenham, Andre and Joshua Larocque, who he also mentioned in question period.

“When the two brothers had a cold recently, the boy on the drug trial was able to shake the cold like a normal child would; the boy who wasn’t on the drug trial was sick for weeks. He coughed nonstop for hours and days at a time. He coughed up blood and lost significant weight. His lung function dropped by over 20%,” said Wilson. “Every time this 7-year-old gets a simple cold, he loses more lung function. He will eventually become resistant to antibiotics and require lengthy hospitalizations and he could and very much probably will ultimately need a lung transplant without drugs like Kalydeco, Orkambi and other gene-modulating drugs.”

In addition to his comments earlier in the day, Wilson had the following advice for the government: “In my 30 years as an MPP and as a former Health Minister, every rare disease drug that is ever mentioned in the legislature ultimately ends up receiving public coverage. The government knows it will end up paying for these medications, therefore they should be proactive in their funding so people like the Larocque boys in my riding and other Ontarians don’t continue to suffer.” 

Wilson would like to thank Madi and Beth Vanstone along with Sasha Haughian and Jamie Larocque for coming to Queen’s Park today.  He felt their presence made a real difference by garnering a great deal of media interest. 

You can watch a video of Jim questioning the Minister of Health on the issue here, 

You can watch a video of the press conference on the issue here,

 

cf meeting before pc feb 2020.jpg WEBISTEbeth and madi vanstone cf feb 2020.jpg WEBSITEjim with media cf feb 2020.jpg WEBISTE


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