Hard to simply breathe

All Melissa Verleg wants is to live as normal a life as possible.

But without a life-changing drug, simply breathing can be a challenge.

Verleg has cystic fibrosis and has been taking a drug called Orkambi, which has made a huge difference in her quality of life.

However, the drug is expensive - coming in at $250,000 a year - and the government refuses to pay for it.

Verleg took her last Orkambi pill on Jan. 20 and the effect on the mother of two is noticeable.

Castanet also spoke with Verleg the first week of January when she was on Orkambi and she was vibrant and full of energy.

However, after being off Orkambi for just three weeks, Verleg sounds tired and weak.

“I'm not in good shape. I'm very short of breath; I am coughing excessively again. My energy has plummeted to the point I can barely get out of bed. It's really affecting every day of my life,” she said. “When I'm on Orkambi, I can live normally almost. My Cystic Fibrosis is in the background, it is not dictating my life like it is now.”

Verleg said there is a “small light at the end of a very long tunnel” as the makers of Orkambi have once again applied for the drug to be approved in Canada, but that approval could take up to two years.

And for Verleg, that means months of barely being able to breathe and not being able to live a normal life.

She has attempted to contact NDP Health Minister Adrian Dix on numerous occasions, but said Dix has never responded to her queries.

Castanet has also left a message with Dix for comment on the matter.

Verleg is hoping Dix can fund and fast track the drug and she is encouraging people to contact him by phone at 250-953-3547, email and even Facebook to request the government take action.

She is also encouraging people to contact Premier John Horgan with the same request.

Tanya Kraft has known Verleg since elementary school and she is organizing a fundraiser to help her life-long friend.

On Feb. 17 starting at 4 p.m. at the Howard Johnson in Enderby, people are encouraged to take part in the event that will feature a silent auction, a DJ and dance, food and other activities.

Kraft said money raised from the event will be given to Verleg to help cover medical costs associated with her treatments for CF.

“We are just trying to take some of the pressure off of her family,” said Kraft.

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