Kate Bouey – Nov 16, 2017 / 5:00 am | Story: 211658
A rally will be held in Victoria Nov. 29 calling on the government to fund the drug Orkambi.
A rally is to be held on the steps of the provincial legislature in Victoria later this month as two B.C. women ask for help to purchase an expensive drug which helps them lead normal lives.
Melissa Verleg, a 34-year-old Vernon mother, and Lilia Zaharieva, a 30-year-old student at the University of Victoria, suffer from the genetic disease, cystic fibrosis, for which there is no cure. The disease can also lead to a premature death.
Both women, as well as Cystic Fibrosis Canada, have pleaded with Health Minister Adrian Dix to fund the drug Orkambi, which has been priced at $250,000 a year. So far, Dix has refused to negotiate.
“On Nov. 1, Vertex Canada, the makers of Kalydeco and Orkambi, presented the provinces with a proposal on Orkambi at a what the company describes as a significantly reduced price,” said a release from CF Canada. “CF Canada is urging the provinces to negotiate with Vertex and to reach an agreement on price, so that over 1,000 Canadians living with cystic fibrosis who could potentially benefit from this drug will finally be able to access it.”
A ‘Call for Action’ rally, organized by CF Canada is planned outside the Legislature in Victoria on Wednesday, Nov. 29 starting at 11:45 a.m.
Verleg is unable to attend the rally but has asked a friend to represent her.
“The more people we have attend the more likely that we will get their attention,” Verleg said.
She also asked for people to continue emailing or calling Dix, at 250-953-3547, to press him to change his mind.
