Melissa Verleg, 34, stands in her kitchen in Vernon. In the past year, she was finally able to start cooking meals again thanks to Orkambi. Now, she's afraid of losing everything she gained because her medication is no longer covered.

(CHARLOTTE HELSTON / iNFOnews.ca)

VERNON - A Vernon woman says her life is filled with uncertainties as she fights to get access to a life-changing medication.

Melissa Verleg, 34, suffers from cystic fibrosis but finds relief from a drug called Orkambi. The drug, which is manufactured by Vertex Pharmaceuticals, slows the progression of the disease.

“Basically, it tells cystic fibrosis ‘go sit in a corner, relax, and let her live her life,’” Verleg says.

Last summer, Verleg’s health insurer announced changes to its benefits program that puts a $20,000 annual cap on coverage. Orkambi costs about $22,000 a month. The drug is not covered by Fair PharmaCare.

READ MORE: 'I am terrified': Vernon woman days away from running out of life-changing drug

Verleg, along with backing from Cystic Fibrosis Canada, has very publicly been asking Health Minister Adrian Dix to fund Orkambi.

“All he tells us is it’s too expensive, and it got a negative recommendation from the review panel,” Verleg says.

The Common Drug Review is the process through which drugs are either recommended for funding, or not. There are technical and specific reasons why Orkambi got a negative review.

READ MORE: Why B.C. isn't funding new 'life-changing' drug for some cystic fibrosis patients

Complicating matters further, is that a different drug, Soliris, was approved for funding this week on a case-by-case basis. The blood disorder medication is one of the world’s most expensive drugs, and like Orkambi, it did not get a positive recommendation from the review panel.

“It’s totally unfair,” Verleg says.

She fully supports the approval of Soliris, and considers it a huge victory for those who need it, but is puzzled at why it’s being funded while Orkambi is not.

A wife and mother of two young children, Verleg says the uncertainty of her Orkambi supply (which will run out in January) has taken a huge toll on the family.

“I’m left in limbo wondering if, after Christmas, I’ll have my medication,” she says. “I am a mess. I’m exhausted mentally and physically.”

RESUBMISSION POSSIBLE

Health Minister Adrian Dix did not make time for an interview with iNFOnews.ca for this story. Instead, a communications officer sent us a transcript of another reporter’s interview with him on Thursday, Nov. 23. Despite follow up questions, the transcript remains our only source of information from the minister.

In the transcript, Dix tells reporters there is a difference between Soliris and Orkambi, primarily that Soliris had been approved for “extremely limited use” in five provinces outside B.C., while Orkambi is not approved anywhere.

Dix also says that on Nov. 13, the Canadian Agency for Drugs and Technologies in Health implemented revised resubmission criteria for its Common Drug Review process that will make it possible for Vertex Pharmaceuticals to resubmit evidence for Orkambi’s efficacy.

“What they (Vertex) need to do — and the sooner they submit, the better — is go through the process that's been set up in Canada. I understand that the company doesn't like that process, but what we've done, I think, in two months, really, not in response to Vertex but in response to concerns raised by cystic fibrosis patients and their families, is made a very significant change in the way that (the Canadian Agency for Drugs and Technologies in Health) assesses and receives evidence,” Dix says in the transcript.

As of Nov. 22, Vertex had not submitted any further evidence for review, Mitch Moneo, the executive director for PharmaCare, says in the transcript. He also says the review process typically takes about five to six months.

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