Advocacy Update From the Desk of the CEO

JANUARY 29, 2020

Improving access to the new life-changing cystic fibrosis (CF) medications is a priority for Cystic Fibrosis Canada (CF Canada) and we have been working hard, alongside many people in the CF community, to ensure these medications become available for Canadians living with CF.  ​ 

We, at Cystic Fibrosis Canada, believe it is critical that you are informed about our advocacy work, as well as ways you can help, and this update is the first of regular updates to come from us.

With the announcement of the U.S. Federal Drug Agency’s (FDA) approval of Trikafta, followed by announcements that England and Wales agreed to publicly fund Orkambi, this fall was a tremendous time of hope in our community, followed by a tremendous sense of disbelief and disappointment in Canada given our limited access to modulator treatment.

Following these announcements, we provided support to our community, engaged with provincial and federal elected representatives, communicated with provincial and federal staff in Ministries of Health, met with Vertex and re-activated our advocate network.The following is a brief overview of our work.

Advocacy highlights

Over the past few months we:

  • Wrote and met with provincial ministers of health and drug managers, calling on them to expand funding for the modulators that are already approved for use in Canada and to reduce the barriers to access Orkambi.
  • Called on Vertex, through letters/messages and meetings with staff, to apply to Health Canada now for approval of Trikafta.
  • Held an online media and government relations workshop to help people in their efforts to pitch to media and meet with their elected officials.  
  • Created a ready-to-use template to simplify sending a letter to provincial elected leaders. Many of you have written letters and calls, made videos, met with their elected representatives, staff, and public servants, and pushed so hard for access to new medications for cystic fibrosis. Thanks to you, our amazing volunteers and community, who give time and energy to amplify our collective voice across the country.
  • Called on Vertex and Health Canada to start a special access programme for Trikafta and communicated the pertinent information to the clinics. All of our efforts worked! A special access program for Trikafta has been established.
  • Launched a petition calling on the federal government to do just that. Our petition gathered more than 40,000 signatures so far. Thanks to all who signed it. (It’s not too late to add yours – the petition closes on January 31.) 
  • Supported members of the community in meeting with their elected representatives, staff, and public servants
  • Discussed advocacy strategies to improve access to life-changing medicines with other CF patient organizations world-wide, learning what did, and what didn’t work for them.

To help our community be heard, we launched #cfcantwait, an online social media campaign that encouraged people to share their drug access stories while putting pressure on the manufacturer of Trikafta to apply for Health Canada approval, which is required for a drug to be sold in Canada. Thank you to so many of you who participated and shared your stories online. 

The media relations campaign we conducted for #CFcantwait saw great success with interviews coast to coast, including Newfoundland, British Columbia, Ontario, Alberta and Quebec. 

Changing the Federal health system

Standing in the way of access to new CF treatments are some limitations in how new drugs are reviewed and priced in Canada. As a result, we have been focusing on influencing the federal health system to ensure new drugs, such as Trikafta, and others in the pipeline are reviewed fairly and in a timely manner.

Influencing policy
We’ve been spending a lot of effort in the background to ensure new drugs will come to Canada. The federal government recently proposed changes to the way new drugs are reviewed and priced in Canada. Some of the proposed changes to the Patented Medicines Price Review Board (PMPRB) have met with near universal concern from the pharmaceutical industry, to the point that companies are wondering if it’s worth bringing drugs to Canada, or when. 

As a result, we have been focusing on influencing the federal health system to ensure new drugs, such as Trikafta, and others in the pipeline are reviewed fairly and in a timely manner. 

We are participating with our coalition partners in a consultation process regarding the changes to ensure that any implemented changes are fair and do not inadvertently hurt our community. 

A rare disease strategy
And we continue lobbying for a rare disease strategy because drugs for rare diseases are different than more common drugs. They’re often more expensive and supporting data are harder to come by. 

The federal government announced in their 2019 federal Budget that a rare disease strategy would be coming in 2022. But our medicines are here now and we need this strategy now. We are actively advocating to have this strategy implemented asap.  

Stay tuned, as there’s much more to come. This spring we will be holding a series of meetings with federal elected representatives and a lobby day on Parliament Hill to advocate for the changes we need to ensure our new medications are making it to Canada.