This year’s North American Cystic Fibrosis Conference (NACFC) took place November 2-4 in Indianapolis, Indiana. This is the largest cystic fibrosis (CF) conference in North America, and it brought together researchers, clinicians and advocates from across Canada, the United States, and beyond. The conference acted as a forum to discuss treatments and current issues, present new research findings, and review and enhance current treatment protocols, while building the network of care across Canada and internationally.
Cystic Fibrosis Canada was pleased to attend the conference, and to host 3 meetings for the Canadian CF community: 1. A Quality Improvement meeting, which included updates from 4 clinic teams that participated in quality improvement projects over the past year; 2. A Nursing Advisory Group meeting, where nurses from CF clinics across Canada gathered to engage in talks on current and emerging issues; and, 3. A Canadian Clinics meeting, where clinicians and researchers from across Canada gathered to discuss relevant topics.
In addition, the conference featured 3 plenary sessions, which were recorded and are available for viewing here.
The first plenary, “Matching Medicines with Mutations” led by Dr. Michael Boyle and Dr. Philip Thomas, reviewed recent advances in CF treatments. Primarily, they spoke about CFTR modulator drugs, which are drugs that address the underlying defect in CF, rather than merely targeting symptoms. Dr. Boyle and Dr. Thomas discussed ways to bring these advances to those in the CF community with rare mutations. Using a process called theratyping, researchers are able to use laboratory data to identify which mutations are responsive to certain drugs. These drugs are then able to be made available to patients who can experience health benefits, and an overall improved quality of life. The talk highlighted the story of two individuals with rare mutations in the CF community, and how theratyping has the potential to benefit them, both now and in the future.
The second plenary, “Lung Transplantation: Challenges & Opportunities for Advanced CF Lung Disease” led by Dr. Joseph Pilewski, reviewed why lung transplantation is an important topic for the CF community, and highlighted the transplant journey. The talk covered indications for transplant, such as a declining lung function, among other risk factors. Including a plenary talk on transplant indicates the relevance of this topic, which is also an increasing area of focus for Cystic Fibrosis Canada, who presented a poster during the conference on our Transition to Transplant program, a project being undertaken in partnership with St. Michael’s Hospital and Toronto General Hospital.
Finally, the third plenary, “Partnering With the Community” led by Dr. Drucy Borowitz and Mary Dwight, focused on advocacy, with the message that individuals with CF and their families can make a real difference in influencing policy in ways that positively impact the CF community. The talk was a strong call to action for all members with a stake in CF, calling people to get involved in any capacity that they can, whether by making phone calls to their political representatives, sending emails, or conducting face-to-face meetings. Cystic Fibrosis Canada would like to urge all people interested in advocating within the Canadian context to contact us at 1-800-378-2233 or email firstname.lastname@example.org.