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Volunteer Advocate
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Canada, what are you waiting for?

When a recent Canadian study demonstrated the dramatic life-saving benefits of the cystic fibrosis drug, Trikafta, Cystic Fibrosis Canada intensified our calls to the government and manufacturer to do what is needed to get Trikafta to Canada now.  

We asked members of Cystic Fibrosis Canada’s National Advocacy Network if they had a message for the Canadian government. Here’s what they had to say: 

Nichole Kessel, sibling of someone living with cystic fibrosis:

“What if it was your son or daughter who was dying of cystic fibrosis? Would access to life saving medicines even be a question then? What if it was your brother, mother, sister, or father suffering from a fatal illness? Would the restricting PMPRB regulations even be contemplated? What if it was you who was drowning on your own mucus? Would a rare disease strategy not be a priority, instead of just another promise for the future? Canada, can you hear us? Your citizens are dying when there are medicines available just next door. Cystic Fibrosis can’t wait. [My brother, Eric] can’t wait.” 

Megan Parker, living with cystic fibrosis:

“All I want to do is be the best mother and wife that I can be and be there for my family through all of life’s important milestones: birthdays, graduations, marriages, anniversaries. I want to see my kids graduate and build their own lives. I don’t want to feel rushed and pressured to travel and take trips now, before my lung health declines to the point where traveling in the way that I want to will no longer be possible. All I want is to have the extraordinary privilege of living a normal and ordinary life. But for this to be possible, my life depends on being able to access life-changing medications. My life is worth it. My kids’ lives are worth it. The CF Community is worth it.”  

Jocelyn James, mother of a child living with cystic fibrosis:

“I want [the government] to know that they cannot put a price on a human life. I want them to know that it is their duty, as public servants, to serve their constituents to the best of their abilities. This includes ensuring that innovative, life improving medications are available in a timely manner. I want them to know that my son, Steven James, is an amazing child, and that he can best serve his country and its economy [if he’s] healthy. He deserves that chance.” 

Janelle Dawson, lives with cystic fibrosis:

“Growing up, every birthday wish and shooting star I would hope for a cure. Today, the next best thing to a cure is here [Trikafta]  and we cannot access it! There are days when I cannot get enough oxygen into my lungs. It is terrifying, and no one should have to experience what suffocation feels like when there are medications available that can substantially increase lung functions and greatly improve quality of life. No parent should have to attend their child’s funeral.” 

Talia D’Alessio, living with cystic fibrosis

We need to have these modulators fast-tracked today. These are not drugs that just “mask” the symptoms [of cystic fibrosis] or that work for a certain period of time like antibiotics. These new modulators, like Trikafta, are probably the closest thing to a cure that I am ever going to see in my lifetime, and we should all have access. There are people dying right now. Can you imagine the pain that people living with cystic fibrosis and their families are in, knowing that there is a drug that could save their lives, but the government’s process takes years for it to pass in Canada, and that they probably will not have access to it in time? That is painfully heartbreaking and devastating to think about, but it is reality and we need to make a change now.”