Cystic Fibrosis Patients Call on Premier Ford to Provide Immediate Access to Life-Saving Treatments

TORONTO, March 18, 2021 /CNW/ - Ontarians with cystic fibrosis (CF) made an emotional plea to Premier Ford this week in a video that has been seen over 11,000 times on social media. Children and young adults with CF are asking Ford to fast-track access to gene modulator therapies: Orkambi, Kalydeco, and Trikafta (https://tinyurl.com/yxnckd8a).

Ontarians with CF are dying without these therapies — which are the standard of care worldwide. These treatments represent the single most significant advancement ever in CF care since the genetic mutation was discovered at SickKids hospital in 1989. These therapies can slow, halt and even reverse progressive damage that CF patients endure while reducing the need for other costly, invasive and ineffective treatments. 

Despite Orkambi and Kalydeco being approved for use in Canada for several years, they are nearly impossible to access due to restrictive prescribing criteria. Trikafta has been submitted to Health Canada and is pending approval. 

CF Get Loud (CFGL) is a patient-led grassroots movement fighting for access to CF gene modulators. CFGL urges Premier Ford and the Ministry of Health to instruct the pan-Canadian Pharmaceutical Alliance to finish negotiations with the manufacturer and immediately list Orkambi and Kalydeco on the provincial formulary for any patient who could benefit. CFGL asks that Premier Ford also commits to listing Trikafta on the public formulary as soon as Health Canada approves it. 

Canadian CF patients have been fighting for access to gene modulator therapies for six years, while patients worldwide have been given their lives back. The bureaucratic hurdles to accessing new medicines in Ontario are causing preventable suffering and early death while wasting precious healthcare resources. 

CF FACTS 

• Most common fatal genetic disease affecting roughly 1500 Ontarians
• A progressive multi-organ disease that mainly impacts the lungs and digestive system
• The only end-stage treatment is a double-lung transplant
• Every week in Canada a CF patient dies, half of them under age 33
• A child born today with access to Trikafta would have an additional 9.2 years added to their life expectancy

www.cfgetloud.ca 
https://www.facebook.com/groups/CFGetLoudCanada,
@CFGetLoud (Instagram & Twitter)

SOURCE CF Get Loud

Beth Vanstone (CF Get Loud), 905 716 6720, [email protected]; Kaity Brady (Video Director, CF patient), 416 738 8901, [email protected]