The U.S. has had legislation on drugs for rare diseases for 40 years. Canada hasn\u0027t even come up with a common framework.
Zachary, a young man who lives with cystic fibrosis, was given hope when his specialist told him about the life-changing drug Trikafta. Cystic fibrosis severely damaged Zachary’s lungs, leaving him with a persistent cough, regular wheezing and the feeling that he was breathing through a straw every minute. He could no longer work.
But Zachary’s compassionate access has ended. If Zachary does not get coverage soon, he will have to stop taking Trikafta and likely end up back on the lung transplant list and unable to return to work, his family once again fearing that he might not live to get new lungs. People who are very sick are slipping through the cracks, including Zachary, who is stuck between a private insurer that won’t pay and a public plan he can’t afford. Too many Canadians with rare diseases face prescription costs that are twice what the average Canadian makes in a year.Article content
While there have been many consultations and commitments, there has been little action. The United States has had legislation in place for drugs for rare diseases for 40 years, yet Canada can’t even come up with a common framework.Article content
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