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

(CHARLOTTE HELSTON / iNFOnews.ca)

VERNON - Time is running out for Melissa Verleg.

The Vernon woman, who suffers from cystic fibrosis, has just nine days worth of a life changing medication left. After that, her doctor estimates she has a week before the debilitating symptoms of the genetic disease begin to set in again.

“I am terrified,” Verleg, 34, says.

The drug is called Orkambi, and since she started taking it just over a year ago, her quality of life has changed dramatically.

“I am able to be a mother to my children again, and a wife to my husband,” she says. “I can cook, I can clean my house for the first time in four years. I can go and play with my children. I used to be a spectator in life watching it happen. Now I am involved in life, and not on the sidelines.”

In mid-July, her health insurance provider announced changes to its benefits program that puts a $20,000 annual cap on coverage. Orkambi costs about $22,000 a month.

A letter sent to Verleg on behalf of the Automotive Retailers Association, which provides the benefits plan, states the amount is “very generous and virtually no employee will run to these maximums especially when the province’s drug coverage (is) available through the FAIR pharmacare program.”

Verleg says she tried to negotiate with the association but got no where. Now, she’s stepping up her fight and trying to get the attention of B.C. Health Minister Adrian Dix.

“We pay into our private insurance, we pay our MSP premiums. We pay our taxes. We have a universal health care system and it needs to be universal,” she says. “Price should be a non-issue.”

In an open letter posted to Facebook and shared more than 450 times as of Sept. 21, Verleg implores people to share her story with Adrian Dix and their local MLAs. Her hope is that the minister will re-open negotiations with the manufacturer of Orkambi and fund it so that patients can access it.

“It’s a very expensive drug, but there are other drugs that are expensive that the province funds. People with cystic fibrosis should have no different treatment,” she says.

She’s not the only one speaking out. Lilia Zaharieva, a 30-year-old University of Victoria student with cystic fibrosis, says she is also on a dwindling supply of Orkambi.

iNFOnews.ca requested an interview with Health Minister Adrian Dix, however one was not provided. A spokesperson did send a transcript of an interview Dix did with a different media outlet. In it, Dix says Orkambi was reviewed and the recommendation was that it not be funded.

“The issue is that the Common Drug Review didn't approve the drug for funding for reasons of efficacy and cost. So those were the expert recommendations we have and, in general, the recommendations of the (review) and the panel here, which are the recommendations of experts, are the ones we follow in these cases,” Dix says.

He adds that the drug company charges $255,000 per person, per year for Orkambi.

“So it's an extremely expensive process and, as I understand it, has not been agreeing to any kind of humanitarian process or at least not in the cases that have been brought to my attention,” Dix says. “So we have enormous sympathy for the people involved who, in their cases, were taking this drug based on private insurance they have and are now off it. And obviously it's a serious matter and we take it seriously and we were relying on the expert advice we've received.”

Adrian Scovell, director of business development and marketing with the Automotive Retailers Association, says it’s an unfortunate situation. He’s still gathering and confirming details of the association’s talks with the manufacturer of Orkambi, but says they've been trying to work things out. 

“We've been in contact with them. We’ve been saying we have a client, they need your drug. We want to cover it,” Scovell says.

The association will cover up to $20,000, but until FAIR Pharmacare accepts Orkambi, patients are on the hook for the rest of the enormous cost.

There is no cure for cystic fibrosis, and the gradual damage done to an individual’s lungs is eventually fatal for most people. Verleg is desperately hoping to buy herself some time with Orkambi.

“It’s hard knowing you are going to get sick and it’s unnecessary because there is treatment,” she says through tears. “Cystic fibrosis is an ugly disease and I don’t want to go there if I don’t have to. I don’t want to miss playing with my children and doing their homework with them. I don’t want to miss that anymore.”

Verleg says she also began contacting Vernon-Monashee MLA Eric Foster's office a few weeks ago, but has not been granted the opportunity to speak directly with him. She says his office directed her to the organization Cystic Fibrosis Canada. 

— This story was corrected at 8:23 a.m. Sept. 22, 2017 to reflect that the Automotive Retailers Association responded to a request for an interview. An earlier version erroneously stated calls were not returned by deadline. 

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