Access to CF medicines in Canada – CF Canada blog circle

FEBRUARY 28, 2020

Access to medications is one of the most important priorities for Cystic Fibrosis Canada. Together with the Canadian CF community, our CEO, our advocacy program team, staff, volunteers and Board have been and are working hard to ensure people living with CF in Canada have access to new life-changing medications.

We’ve asked our community members about how the current drug landscape in Canada has affected them personally, as well as how the issue of access makes them feel. Here’s what a few people had to say: 

“Because I am post-transplant, I do not have access to gene-modulating drugs such as Orkambi, Symdeko and Trikafta (not yet available in Canada). However, I have seen first-hand the effect that these drugs have on the health of my CF peers who are fortunate enough to have access.  It makes my heart happy to see the incredible transformations that occur in the health of these patients.

The current drug access situation in Canada is criminal. I am angry, frustrated and confused. However, there is also fierce determination and hope. CF advocates in Canada (including me) have been lobbying MP’s, MPP’s, and drug companies. We are working hard to make the government realize that by not approving these medicines, they are sentencing Canadians living with CF to a life of unnecessary health complications and eventually death.

I cope through advocating for access to new treatments, educating myself on the issues and taking action where I can. Preventing our younger CF population from having to experience the hardships that many of us had to go through is more than worth it!”

Brenda Chambers-Ivey

“I believe access to drugs in Canada is a complicated issue. I am a CF patient on the other side of double lung transplant. I have access to the medications that I need. I am incredibly grateful for that.

I know first-hand how immeasurably difficult it is to be at end stage CF. I have been gifted new lungs which to me, is miraculous. With that being said, I still have cystic fibrosis. [Trikafta] could address other complications I have from CF. I am hopeful that I, along with thousands of others, will have the opportunity to find out.

As I write this, the most innovative drug in treatment of CF is currently not available to Canadians.  This is a source of frustration and disappointment. It’s heartbreaking to know that this drug is out there ready to help people that need it.

The dedication of those who work daily to try to solve all the intricacies of CF keeps me motivated I am inspired to never quit. Opportunities to advocate along with the CF community and to offer insight regarding living with CF leave me feeling hopeful that more prompt and reasonable decisions will be made regarding drug access.”

Alexander McCombes

“I’m one of the lucky ones who were eligible to be a part of the most recent Trikafta research study. I’ve been taking Trikafta as part of the study since September 2018. How long this study goes on for however, is another question. Whether or not I’ll have access to Trikafta after the study has completed is something that is incredibly worrisome for me because the government is preventing me from accessing it.

What’s even more troublesome is thinking of those who were taking one of the new CF modulators then had to stop taking it because their drug coverage ran out and the government isn’t providing any funding.

It’s difficult to sum up my thoughts around this because it’s all so upsetting. What I really feel is incredible disappointment. I’m disappointed and ashamed of our government for not stepping up. I’m completely heartbroken for those who have suffered immensely because they haven’t had access to these medications.

Until these drugs are approved and access to them is made available, the only way I can cope is to try to do something about it. Working with CF Canada in their advocacy efforts has been my only way of coping with the incredibly frustrating situation many Canadians with CF are being forced to face.”

Kim Wood 

“It is very frustrating to know that there is an effective control for CF being used in many parts of the world, but we don’t have access to it here in Canada. It makes me want to wait to make big decisions (like having children) until I know whether or not I will have access to medications, like Trikafta.

I am finding it stressful to have to advocate so hard for something that would make such a difference in so many people’s lives. Constantly seeing posts on social media about people with CF who are dying while waiting for access to life-changing medication is very difficult, and even though I feel like I’ve done everything I can to make our voices heard, I still feel helpless in it all.

The best thing I can do to cope is to take action by writing letters to politicians and encouraging my friends and family to do the same. Other than that, I am trying to limit the amount I spend interacting with social media, and I’m also practicing stress-reducing activities like getting outside, reading, and meditation.”

Terra Stephenson