Meet Maddy Bianchin!

Meet Maddy Bianchin! A recent graduate of Trent University, now a registered nurse in an emergency department, Maddy is one of the few people in Ontario who has access to and is taking the new life-changing treatment, Alyftrek. 

Growing up and living as a young adult with CF 

When Maddy was born, the median age of survival for people with cystic fibrosis was 32 years old. Growing up, she spent about three hours each day doing inhalation treatments and chest physiotherapy and took more than 50 pills daily. In addition, she underwent seven surgeries related to CF complications and attended cystic fibrosis clinic appointments every three months.  

As a child, the hospital was an unfamiliar and often intimidating place for Maddy. However, the sense of community she found at her CF clinic inspired her to pursue a career in healthcare. She wanted to make a difference in the lives of others, just as the CF clinic team had done for her. 

Navigating CF together as sisters 

Maddy and her older sister, Mikayla, both grew up living with cystic fibrosis. From a young age, they completed inhalation treatments together and attended CF clinic appointments side by side. Having a sister who shared many of the same experiences gave Maddy someone who understood the realities of living with CF and the challenges that came with it.  

As they got older, however, the differences in how CF affected them became more apparent. Mikayla's lung function declined significantly, leading to more frequent hospital visits and greater health challenges. When she gained access to Trikafta in December 2021, it marked a major turning point in her health journey. The treatment dramatically improved her quality of life. For the first time in years, she no longer needed to spend three hours each day on inhalation treatments, could breathe more easily, and had the energy to take on new challenges, including completing her first 5K race. 

For Maddy, the experience was different. She was unable to access Trikafta due to funding barriers. Watching its impact firsthand made the situation especially difficult. She often found herself asking, "Why was my sister able to access this life-saving medication while I couldn't?"  After months of advocacy and exploring every available option, in February 2022, Maddy was finally granted access to Trikafta. She went from doing three hours of inhalation treatments a day to zero! Her lungs felt clearer; she could breathe more easily.  

A new life-saving treatment, Alyftrek 

Maddy switched to Alyftrek, a new CFTR therapy, in July 2026. Before starting the treatment, she had read about and heard of several potential benefits, including greater reductions in sweat chloride levels, enhanced chloride transport, and the convenience of a once-daily dose compared to Trikafta, which requires both morning and evening doses. Alyftrek treats the mutations that Trikafta does and is also approved for a broader range of CFTR mutations, making it accessible to more people with cystic fibrosis. It may also work for some people who have mutations that fall outside of the Health Canada indication. 

Since starting Alyftrek in July, Maddy noticed she has been coughing up more mucus. She’s also found that the once-daily dose fit well with her schedule as a registered nurse, making it easier to stay consistent with her treatment regimen during busy shifts. While it's still too early to fully assess the impact of the medication, she remains hopeful that it will lead to further improvements in her lung function and overall health.  

Accessing Alyftrek in Canada 

Maddy first learned about Alyftrek through her CF clinic, which encouraged her to look into whether her workplace health insurance would cover the treatment. After confirming that Alyftrek was covered under her plan, the clinic helped her complete the necessary paperwork and coordinate a smooth transition from Trikafta to Alyftrek. The process took a couple of months from start to finish. 

Living in Ontario, where Alyftrek is not yet publicly funded, Maddy recognizes that not everyone has the same access to treatment. While she was able to obtain coverage through her employer's insurance plan, her sister, Mikayla, is still waiting for access to Alyftrek.  

Importance of access to new CF treatments 

Maddy believes that access to new CF treatments is essential for the entire cystic fibrosis community.  

Although Trikafta has significantly improved the health of both Maddy and her sister, Mikayla, they continue to experience complications related to CF. In fact, Mikayla has had multiple CF-related hospital admissions this year. For Maddy, the possibility of accessing newer treatments such as Alyftrek is incredibly important. She hopes that continued innovation and improved access to CF medications will help people living with cystic fibrosis, including her sister, achieve the best possible health outcomes.