'Give me my life back'

"I have to be a spectator in my life now."

At a press conference held on Tuesday morning, Melissa Verleg pleaded for her life back.

The Vernon mother of two wants to live a normal life, but after being forced off the prescribed drug she was taking, called Orkambi, her life has spiralled downhill.

Verleg suffers from cystic fibrosis and needs the medication to sustain a normal quality of life.

"I have made hundreds of requests to talk to Mr. Dix, he does not return my phone calls, emails or Facebook messages," she said.

Up until Jan. 20, Verleg was covered by her husband's medical through his job but the insurance company has since taken Orkambi out of their policy.

The drug rings in at a hefty $250,000 per year and the government will not pay for it.

"There are a few people around in both Alberta and B.C. that have received compassionate coverage for Orkambi from the company, unfortunately, Melissa is not one of them," said Eric Foster, Vernon-Monashee MLA. "Last September I met with the minister of health and he wasn't very helpful at the time."

"Vertek has given compassionate coverage to a lady in Victoria who is in the same boat as Melissa and a lady in Alberta, which is great, but the issue is they won't give it to Melissa because they don't feel she is sick enough yet."

Verleg fought back tears while she explained her situation.

She doesn't want to be almost dead before she is able to get the life-saving drug.

Since her final dosage of the drug in January her lungs have already started deteriorating.

"I can not clean my house, I can not play with my children. We went camping  this weekend, I couldn't ride a bike with them," Verleg said through tears.

"I just really wish that Vertek or Mr. Dix is listening and that they are willing to step out of the process in this extraordinary case and give me my life back."

The makers of Orkambi applied for the drug to be approved in Canada, but the approval could take years.

"Basically I'm just in limbo here waiting for someone to help me or to get sick enough that I need a double lung transplant, there are no alternatives."

Verleg hopes that Orkambi provides her with compassionate coverage or that NDP Health Minister Adrian Dix can fund and fast-track the drug.

In an earlier interview with Castanet, Dix said he spoke with Verleg last year and appreciates the impact not having the drug is having on her life.

Dix noted Vertex brought Orkambi to the common drug review in 2016 and 2017– which is standard practice – but it was rejected three times because Vertex could not bring all of the evidence for why it should be listed.

Then Liberal Minister of Health Terry Lake refused to allow the drug in B.C.

Since becoming health minister, Dix said he and his staff have done what they can to get the drug listed.

“We made a real effort to convince the company of the need to re-apply and I'm happy so say they have agreed to do that,” said Dix. “They are going to present their evidence in front of the common drug review, but that doesn't guarantee that the drug will be approved.

"The minister of health, Adrian Dix, or Vetek the company and I've had a lengthy conversation with, both could fix this with the stroke of a pen," said Foster.

 "I just feel that one of them could help me live a normal healthier life," Verleg said.