The North American Cystic Fibrosis Conference: Planning for the future of a disease in transition 

NOVEMBER 17, 2022

A few weeks ago, the Cystic Fibrosis Canada team had the opportunity to attend the North American Cystic Fibrosis Conference (NACFC) organized by our peers at the Cystic Fibrosis Foundation, in Philadelphia, PA. 

The NACFC is an annual conference that brings together researchers, scientists, caregivers, healthcare professionals and clinicians from around the world to discuss topics such as the latest advancements in cystic fibrosis (CF) care and research.  

Zain Cheema (left), Paul Eckford, Maggie Mcllwaine, Leona Pinsky, Stephanie Cheng, Kelly Grover and John Wallenburg (right) pose together at the NACFC.
From left to right: Zain Cheema, Dr. Paul Eckford, Dr. Maggie Mcllwaine, Leona Pinsky, Stephanie Cheng, Kelly Grover and Dr. John Wallenburg.

Dr. Maggie Mcllwaine, Network Manager, Clinical Trials; Stephanie Cheng, Director, Registry; and Zain Cheema presented on behalf of Cystic Fibrosis Canada on topics including the use of inhalations hypertonic saline and Pulmozyme in patients on Trikafta, trends in Canadian cystic fibrosis healthcare utilization amidst the COVID-19 pandemic and the burden of disease for Canadians with cystic fibrosis and their caregivers. The CF Canada team was excited to host the Canadian clinics meeting in person for the first time in two years, fostering knowledge mobilization and connection with the experts who care for Canadians living with CF every day.  

“The landscape of care is changing,” said Jana Kocourek, Director, Healthcare, Cystic Fibrosis Canada, “it was beneficial to discuss the future of CF care and how to reduce the burden of the disease with our peer organizations.” This was a common theme discussed at the conference and was the focus of the plenary session delivered by Dr. Liz Tullis of St. Michael’s Hospital Adult CF Clinic in Toronto. During her session, Dr. Tullis discussed how clinics need to adapt to accommodate the diverse and aging CF patient population. Dr. Tullis noted that previously, it took 30 years for their clinic population of adults with CF to double, but with the impact of HEMT coupled with overall improvements in treatments, they expect to see their clinic population double in the next 10 years.    

Dr. Paul Eckford presenting at the NACFC 2022 in a banquet hall full of people.
Dr. Paul Eckford presenting at the NACFC 2022.

At the conference, there were many discussions about the impact and future of high effective modulator therapies (HEMT), including studies looking at the use of Trikafta in utero and a study investigating if it’s possible to modify daily treatments of individuals on Trikafta. Initial results have been promising as there has not been a decline in health in the individuals that have removed some of their other treatments. The use of HEMT brings a potential challenge of using sputum to monitor lung infection in both study trials and ongoing clinical care. Where many individuals on HEMTs no longer regularly produce sputum. This was highlighted in a session on the final day discussing the utility of induced sputum collection and at-home sputum collection, as well as an exciting talk by Dr. Jane Hill of the University of British Columbia on the work to develop non-invasive methods of infection detection by analyzing molecules on the breath of CF patients. Dr. Hill’s Postdoctoral Fellow, Dr. Behroozian, is jointly funded by CF Canada and Michael Smith Health Research BC, on a project examining breath samples of CF patients. 

Cystic Fibrosis Canada was pleased to see the strong focus on studies and technologies that are looking at rare mutations including HIT-CF, a European research project that is looking to find drugs for individuals with rare mutations through organoids and future clinical trials. This study was of particular interest to the CF Canada team as solutions for rare mutations is a focus of our new research strategy. Other topics of interest to the team included updates on gene therapy, genetic approaches that may one day become lasting treatments for all people with CF, regardless of mutation and a session on data entry for the CF Registry. 

Jana Kocourek presenting at the NACFC 2022 in a banquet hall to discuss cystic fibrosis healthcare.
Jana Kocourek presenting at the NACFC 2022.

At the NACFC, Laurent Pharmaceuticals, a Montreal based company, that Cystic Fibrosis Canada has invested in presented on phase 2 of their lead molecule, LAU-7b. This molecule has the potential to resolve inflammation of the lungs in people with CF, regardless of their mutation, while preserving overall lung function. The results from phase 2 show a promising reduction in lung function loss at 6 months and a clinical benefit in adults with CF alongside CFTR modulators such as Trikafta. 

Thank you to Horizon, Vertex and Viatris for generously sponsoring Cystic Fibrosis Canada at the NACFC. We are grateful for the opportunity to contribute to this global discussion on how we continue to go further for the CF community, ensuring no one is left behind.