Vernon mother with cystic fibrosis says $248K drug has given her life back. But now she can’t afford it

A Vernon woman living with cystic fibrosis has just returned home from Victoria where she was lobbying the province to cover an expensive drug that’s changed her life.

However, the B.C. government and a drug company are trading blame, leaving Melissa Verleg, a mother of two, to face the prospect of having to stop taking her medicine because she simply can’t afford it.

Last week, the mother of two traveled to Victoria to take part in a rally pressing the province to cover Orkambi, a drug that has changed her life.

“It has given me my life back. It has let me be a mother again,” Verleg said.

However, changes to her private insurance mean she no longer has coverage to pay for the pricey drug, which costs over $248,000 a year.

“This battle fighting for my medication has taken a toll on my health. I’ve just got run down, I’ve gotten a bit of a lung infection so I’m on home IV antibiotics because I can’t breathe,” said Verleg.

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She expects to go off the medication in January, after a one-time extension in her private coverage.

The province previously declined to cover the expensive medication after a review said, “there is insufficient evidence to conclude that this drug will improve cystic fibrosis outcomes.”

But Vertex, the company behind Orkambi, questioned that call and said there was another study that hadn’t been considered.

Now the rules for those drug coverage reviews have changed and the province is suggesting that Vertex have Orkambi reassessed for coverage.

“I have total respect for the advocacy that people are bringing forward but some of that advocacy now has to be directed at Vertex as well,” said B.C. Health Minister Adrian Dix.

“They have to follow the rules of Canada and we have to make decisions based on the evidence.”

However, Vertex is pointing a finger back at the province, saying in a statement, “the approach from government to have Vertex resubmit… before moving forward with negotiations means patients will have to wait until 2019 to possibly gain access to Orkambi.”

However, Dix said upfront negotiation on price only helps Vertex’s bottom line.

Caught in the middle are patients like Verleg, who hopes the health minister will step in and cover Orkambi for her while a long-term solution is worked out.

Orkambi has yet to be resubmitted for review.