Color & Control:

A case for access to breakthrough treatments

By Kelly Grover

Since being founded in 1960, Cystic Fibrosis Canada has invested more than $261 million in leading research, innovation and care. These efforts have helped to ensure that Canadians with cystic fibrosis have one of the highest median survival rates in the world.

Today, we face a new challenge. And that is gaining access to a game changing medication that could help 90 per cent of people living with cystic fibrosis in Canada. Over the past year, our community has been fighting tirelessly for access to this life-changing therapy that is available in the United States, United Kingdom, Ireland, and Germany, with other parts of Europe not far behind.

Sadly, the breakthrough drug is not available in Canada because of regulatory changes being introduced by the federal government that affect the Patented Medicines Prices Review Board (PMPRB). While this cystic fibrosis treatment has been thrust into the spotlight during the debate over these proposed changes, we know that breakthrough treatments for other diseases will not be available to patients in Canada.

The world is on the verge of incredible scientific breakthroughs in multiple therapeutic areas from cancer to blindness to Alzheimer’s, which will mean better treatments that can improve and even save more lives. In some instances, these treatments can stop diseases from progressing, while other treatments can reverse damage that diseases have done. Canadians should not miss out on this.

As Canadians, we take great pride in a healthcare system that is universal, accessible, and equitable. But with planned regulatory changes the federal government will be restricting access to new, lifechanging edicines for Canadians. This also means Canadians will be able to participate in far fewer clinical trials. This will force Canadians—who can afford it—to leave the country for better medical care. That doesn’t sound like a healthcare system we can be proud of, and it certainly doesn’t sound like a healthcare system we can rely on to get us the medicines we need.

Simply put, we are at risk of being denied access to world-class medical treatments in Canada. These new PMPRB guidelines and changes are scheduled to take effect in January 2021. Cystic Fibrosis Canada, along with a group of 12 other patient groups and charities, is calling on the government to work with us to find a solution that ensures access to the best medicines but this can’t happen unless we all come back to the table—with meaningful patient engagement and consultation.

To learn more and have your voice heard, go to

Kelly Grover is the President and CEO of Cystic Fibrosis Canada.

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