Statement from Dr. Brian H. Rowe: Cystic Fibrosis Awareness Month

May 2017

May is Cystic Fibrosis Awareness Month in Canada. Cystic fibrosis is the most common fatal genetic disease affecting Canadian children and young adults. One in every 3,600 Canadian children born in Canada have been diagnosed with the disease and over 4,100 Canadian children, adolescents and adults are living with this disease.

I have a personal connection to cystic fibrosis; my wife’s first cousin died of it and we were suspected to have it in our family. Prior to us having children 25 years ago, discussions regarding pre-natal genetic testing and the promises of genetic treatments had just started.

The Canadian Institutes of Health Research Institute of Circulatory and Respiratory Health (CIHR-ICRH) is committed to investing in high quality research that focuses on the causes, mechanisms, screening, diagnosis, and treatment of cystic fibrosis. From 2000-2016 CIHR has contributed $62 million to support research related to this disease, and investments are clearly paying off.

Advances in management have led to improved respiratory function, nutritional status, and a decline in the most common causes of respiratory infections in individuals living with cystic fibrosis. For example, improvements in the overall health of individuals living with cystic fibrosis are reflected in the median age of individuals living with this disease, and their median age of survival. Compared to 1989, the median age of individuals living with cystic fibrosis in 2014 grew by nine years, and the median age of survival was almost double that of 1980.

As Canadians prepare to celebrate our nation’s 150th birthday, important research has demonstrated improved outcomes for patients with cystic fibrosis in Canada. Universal access to high quality clinicians and services (e.g., transplantation) has given Canadians with chronic diseases a health advantage compared to those with similar diseases living in other countries. Results from a recent research study which were recently highlighted in the news demonstrates the improving survival rates for Canadians living with Cystic Fibrosis, and their increased life expectancy compared to their peers living in the United States.

This May, I would like to acknowledge researchers in Canada doing important work in the field of cystic fibrosis. In addition, it’s important to recognize those Canadians who have the disease and their families who have worked tirelessly as advocates, research participants and fundraisers. We would also like to recognize the important funding partners in this fight including the Cystic Fibrosis Foundation, Canadian Lung Association and other granting agencies whose contributions have helped to improve the health and quality of life of thousands of individuals living with cystic fibrosis.

Keep up the great work!

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