Cystic fibrosis victims want province to pay for drug

Health Minister Adrian Dix has refused to give special approval for an expensive drug that may help sufferers of cystic fibrosis, despite calls for him to personally intervene.

More than 100 people gathered on the front steps of the legislature on Wednesday to ask Dix to cover Orkambi, a drug that they say has helped treat their cystic fibrosis but which costs $250,000 a year and isn’t covered by provincial Pharmacare.

Melissa Verleg, 34, said her health has improved dramatically since starting Orkambi in 2016, but she’ll run out at the end of December after her husband’s private insurance dropped coverage of the drug. Because B.C. doesn’t cover Orkambi, Verleg faces a $22,000 monthly bill to continue.

“I will go back to a life barely worth living,” Verleg told the rally. “I will not give in to my disease and I will fight until I win the battle against cystic fibrosis. The province of British Columbia has the ability to grant me the breath to live. I beg to you to approve Orkambi for myself and others that do not have the time to spare. Adrian Dix, be the leader we’re looking for. ”

Dix expressed sympathy on Wednesday, but told reporters it’s inappropriate for a politician to arbitrarily direct coverage for a drug that would cost almost $30 million a year.

Instead, Dix said the province has encouraged Orkambi manufacturer Vertex to reapply to the common drug review process, where recent rule changes will allow for additional evidence to be heard on the drug’s effectiveness. The review has twice previously rejected providing public coverage of Orkambi because of questions about its effectiveness and cost.

“What we’re hoping Vertex will do is respond to what has been an opening available to them for months, and stop with the politics,” said Dix.

Cystic fibrosis is a fatal genetic disease that affects more than 4,100 Canadians, harming their digestive systems and lungs. Orkambi is a relatively new type of treatment, which targets the underlying cause of cystic fibrosis. However, with a price tag of more than $250,000, it is not covered by any provincial drug plan and some private plans have chosen to drop the drug.

Vertex said in a statement Wednesday it has made a confidential offer to provincial governments on Oct. 31 that “includes a substantial reduction to the price of Orkambi and guaranteed budget certainty for government-funded public drug plans.” The provinces want Vertex to first get approval from the Canadian Agency for Drug Technologies in Health, which Vertex said would mean patients couldn’t get the drug covered until at least 2019.

Several of the speakers at the cystic fibrosis rally asked Dix to treat Orkambi like another expensive drug for a rare autoimmune disorder that the government recently agreed to fund on a case-by-case basis. Dix said Orkambi is different because no other province has found evidence to fund it.

Verleg, who lives in Vernon with two boys and her husband, said she can’t wait for the government and Vertex to hammer out a deal or start a new review process.