Living with Cystic Fibrosis in Canada: What does it really cost individuals, the healthcare system and society?

Cystic Fibrosis (CF) is a fatal genetic disease affecting more than 4,300 Canadians. There is no cure. CF is a debilitating disease affecting the whole body and impacts not only the person with CF but their entire family. To stay healthy, people with CF must take expensive medications and spend hours each day completing treatments. This is in addition to multiple doctors' visits and repeated hospitalizations, which are costly not only to the healthcare system but to people with CF and their families. To understand what it really costs to live with CF, we will survey people living with CF and their families to find out how much they spend on out-of-pocket costs for medications and treatments, and the time and money it costs them when they miss work or school to visit doctors, or to stay in hospital for extended periods of time. We will use name, sex, and date of birth to match survey responses on out-of-pocket costs and time to the national Registry which captures information for nearly all people living with CF in Canada, including doctor visits, procedures, hospitalizations, and medications. We will combine these sources to estimate the costs to both individuals and the healthcare system. There are now medicines for CF that are expected to increase the quality and length of life for people with CF by reducing hospitalizations and time spent on care. We will use survey information from people who are taking these new medicines to predict whether these medicines can lower the cost of CF for individuals and the healthcare system between now and 2035. Quantifying the cost of CF, in terms of time and money, will help inform policies for equitable access to all CF medicines to prevent worsening gaps in health between those of higher and lower income. We will work with CF Canada, doctors, and researchers from across Canada to measure and explain the true costs of CF and to advocate for fair access of medicines in Canada.