Okanagan MLA pushes province, drug company to provide compassionate coverage for pricey drug

It’s been more than four months since a Vernon woman with cystic fibrosis was forced to stop taking a life-changing medication because she can’t afford it.

Melissa Verleg said her health has declined significantly since she was forced to stop taking Orkambi.

“I have been sick and lost 12 per cent lung function. I’m down to 46 per cent [lung function].  At 46 per cent, I cannot grocery shop, I cannot clean my house, I cannot play with my children,” the 34-year-old mother of two said.

“I have to be a spectator in my life again and there is no guarantee that I’m going to get any of that lung function back. I believe it is all because I came off Orkambi.”

On Tuesday, Verleg and local Liberal MLA Eric Foster held a press conference to urge the drug company and the province to step up and provide Verleg with compassionate coverage for the pricey drug while wider issues of the drug’s coverage in British Columbia are worked out.

“Because of a power struggle between a major pharmaceutical company and the Minister of Health in the province of British Columbia, her health is deteriorating every day and they could fix it if they chose to,” Foster said.

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

Verleg has been on the drug for 18 months before she was forced to stop taking it because changes to her private insurance meant she no longer had the coverage to pay for the expensive drug which she says costs around $20,000 each month.

For months, Verleg has been lobbying the provincial government to cover the drug that’s changed her life.

Watch Below: Melissa Verleg describes what her life has been like since she was forced to stop taking Orkambi for her cystic fibrosis.

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.”

Vertex Pharmaceuticals, the company behind Orkambi, called the Canadian authorities’ assessments of the drug surprising and untrue.

Now the rules for those drug-coverage reviews have changed and Vertex Pharmaceuticals has re-submitted Orkambi for review.

However, even if the review recommends Orkambi be covered, it could be a long wait before patients like Verleg have funding for the drug.

“It could be as much as a year before it gets through all the other processes,” Foster said.

The provincial health ministry said that it needs to wait for the drug-review process to take place and that any compassionate coverage would be up to the drug company.

However, Foster contends the province does have the power to provide coverage for Verleg.

He pointed to the example of a $750,000-per-year drug called Soliris which, last year, the provincial health minister said would be covered on a case-by-case basis.

READ MORE: B.C. government approves coverage of expensive drug for student with rare disease

“They both [the province and Vertex Pharmaceuticals] have the ability to change Melissa’s life for the better and they are choosing not to,” Foster said.

The province said there are different circumstances for different drugs and it has done as much as it can on the Orkambi file by advocating for another review of the drug.

Global News has reached out to Vertex Pharmaceuticals for comment and is awaiting a response.

– with files from Estefania Duran and Emily Lazatin