CF sufferers have found relief through Orkambi

Re: “Sky-high prices do not mean drug is effective,” comment, Nov. 23.

Lilia Zaharieva, Melissa Verleg and other B.C. citizens live with cystic fibrosis, a disease that attacks the lungs and other organs, leading to frequent infections, hospitalizations and premature death. More accurately, these were the almost certain outcomes before the drug Orkambi became available last year.

Taking Orkambi, Lilia and Melissa have experienced no lung infections requiring costly hospitalizations, no further decline in lung functioning and a rediscovery of joy, accomplishment and hope. According to Alan Cassels, the clinical trial evidence demonstrates that Orkambi has a “minimal impact on quality of life.” Tell that to someone with 39 per cent lung function facing a double lung transplant who experiences daily the benefits of the drug.

Yes, Orkambi is expensive, currently about $250,000 a year. Health Minister Adrian Dix has rejected Pharmacare funding for Orkambi, citing insufficient proof of efficacy and high cost. However, physicians from 42 CF clinics across Canada have asked provinces to fund Orkambi because they know it works. Recently, Vertex formally offered to negotiate a more reasonable price, but Dix has rejected this offer.

The minister has now made Soliris ($750,000 a year) available on a case-bycase basis. This is to be commended, but why is Orkambi not treated the same way?

Come hear Melissa and Lilia speak for themselves and show your support by attending Canada Needs Orkambi rally at the legislature Wednesday at 11:30 a.m.

James Anglin Victoria