What We're Doing

---

This July, both the United Kingdom and the European Union struck deals with Vertex Pharmaceuticals to make Trikafta accessible to citizens across Europe.  In fact, Canada is the only G7 country that has yet to take the necessary steps to allow its citizens to access the medication. It was even given priority status in the United States in August 2019 once it was declared a breakthrough therapy by the FDA and was approved for use a short time after. Trikafta's inaccessibility in Canada is due to the manufacturer's fear of new regulations that Canada is poised to make under the PMPRB (Patented Medicine Prices Review Board). Due to COVID-19, the PMPRB has extended the deadline to implement changes that would have an impact on the accessibility of Trikafta. The new date is January 1st, 2021, allotting some time for bargaining with stakeholders.

According to Cystic Fibrosis Canada, the PMPRB  determines the maximum price a company can charge for a new patented medicine sold in Canada. The board has already made recent regulatory changes to its mandate, ultimately preventing medications like Trikafta from qualifying for approval. These changes are to officially come into effect in January, but the board has already exercised its new regulations when considering new therapies in Canada. This is essentially the reason that Trikafta has yet to be brought forward to Health Canada for approval as the likelihood of its marketability in the country is slim. The changes implemented by the board is the first challenge among m

Following approval, prices are then negotiated between the manufacturer, private, and public insurers. The pCPA (pan-Canadian Pharmaceutical Alliance) negotiates on behalf of the provincial, territorial and federal programs to determine the price that will be paid.

On May 6 2020, access to Trikafta was raised by an MP at the fourth meeting of the Special Committee on the COVID-19 Pandemic. Rather than address the issue with a meaningful response, Health Minister Patty Hajdu suggested that cystic fibrosis patients continue to apply for compassionate care from Vertex. However, this is not an easy process and many of these patients have since tragically passed away while waiting for government action, never being given the chance to experience the benefit of a life-changing medication. 

As of May 20th, 2020, over 17,000 Canadians signed a petition calling for the PMPRB to revoke the changes it has made toward access to medications in Canada that will be adopted in July. These changes will restrict access to Trikafta for cystic fibrosis patients and the results of the petition have yet to be addressed in Parliament.

Many MPs have since joined the fight alongside cystic fibrosis patients to gain access to Trikafta, but there is still work to be done. Both the federal and provincial governments need to put pressure on health ministers to fast-track the bureaucratic process of drug approval. We support Cystic Fibrosis Canada in its advocacy for a drug pricing system that enables faster access to Trikafta, and broader, less restrictive access to other cystic fibrosis treatments.

Thanks to the help of our generous friends and family, we were fortunate enough to raise over $2,500 this year towards the work of Cystic Fibrosis Canada and the Walk to Make Cystic Fibrosis History!

Along with his family and friends, Aaron has been active on keeping up-to-date on developments regarding Trikafta. We have been contacting Members of government to raise awareness and will continue to pressure them to promote access to this important medication. We have requested meetings and have been in touch with the media to try and bring further attention to this issue. We strongly believe that with public pressure on this issue though increased written correspondence and petition signatures, the government will be unable to ignore the demands of the cystic fibrosis community.

We will continue to post our progress and updates on Trikafta.