We brought the Voice of the CF Community to Queen’s Park.

On May 14, the advocacy team from Cystic Fibrosis Canada, including members of the CF community visited the Ontario Legislature, Queen’s Park, to meet with key decision makers and advance our work to improve affordability of cystic fibrosis medicines and access to CF care.  

These meetings are one of the ways we work to ensure the realities of living with CF remain at the forefront of conversations shaping provincial healthcare policy and access to medicines across Canada. 

The discussions 

Throughout the day, we heard growing interest in improving access to and affordability of medications, as well as the need to strengthen support for people living with rare diseases. We also saw continued openness to conversations about how investments in care can improve quality of life while helping reduce broader healthcare system pressures over time. 

We highlighted the financial challenges our community faces in accessing Trikafta and other CF drugs through the Trillium Drug Program (TDP), which has some of the highest costs to join in the country. Many Ontarians with CF pay for the TDP over and above what they pay for private insurance. Some families pay for two private plans and the TDP. We stressed that life-saving drugs like Trikafta should be provided to all who can benefit, free of charge. Ten out of 15 public drug plans do not charge people to access Trikafta, but many in Ontario are burdened by these high costs.  

We also called for changes to Ontario Health Insurance Plan: Children & Youth, also known as OHIP+, which provides free medicines to those aged 24 years and younger who do not have private insurance.  Many private plans do not cover or do not fully cover Trikafta, but under current rules people with these plans, these individuals can’t participate in OHIP+. This means many people in our community could be left behind.      

The next steps: 

Cystic Fibrosis Canada will continue providing information and evidence to support conversations with the Ministry of Health and Members of Provincial Parliament.  We’re also committed to sharing our recent analysis of the socio-economic impact of Trikafta.  

Show in this analysis, this therapy reduced the number of hospital days by 40%, the number of home IV days by nearly 50%, and transplants by nearly 70% for our community between 2020-2022 alone.  We spoke about the important role that Ontario’s public drug plans play in providing access to Trikafta and related therapies, which provenly help many Ontarians with CF live more fully: in school, at work and in daily life.   

We also stressed that drugs like Trikafta are not a cure, and they can’t help everyone in our community.  As we and others continue to focus on future therapies like genetic therapies that may benefit everyone with CF, Ontario needs to get ready to fund these next medicines as soon as they are available.   

We’ll continue building on these conversations and looking for opportunities to keep the needs and experiences of the CF community central to future decisions. 

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