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Vernon  

Struggling to breathe

A 34-year-old Vernon mother suffering from the genetic disease, cystic fibrosis, for which there is no cure, is pleading with people to take up her cause before her condition worsens.

Melissa Verleg, who is married with two sons, has issued a Facebook plea, asking for B.C. residents to share her post with Health Minister Adrian Dix.

In the post, Verleg explains the seriousness of her illness which can lead to a premature death.

“I couldn’t clean my own house or often didn’t have the energy to provide meals for my family. I would need a nap every day just to make it through the day to go to bed exhausted. Sleeping with cystic fibrosis is extraordinarily hard to do. You lay down propped up on three pillows, trying to get into a position where your lungs do not go into a spasm and you can still breathe yet be comfortable enough to fall asleep. Coughing for two-to-three hours every night before I could finally fall asleep was my normal....I could not run and play with my children.”

Verleg says she was a spectator in life until a doctor prescribed a life-changing drug called Orkambi.

“I started Orkambi July 2016, and in the year since starting this medication, my life has changed for the better. My lung function has remained stable, my BMI has been stable, my sweat chloride content has continually decreased and my quality of life, which cannot be measured on any test, has improved.”

Unfortunately, drastic changes to the family's private health care benefits mean the cost of the hugely expensive drug is no longer covered. Verleg estimates that cost at $250,000 per year.

After runninng out of private options, she then discovered the provincial government won't fund the drug either “even though my doctor has prescribed it and I have been thriving on it.”
Verleg is now living in fear.

“I now only have enough medication to take Orkambi until Sept. 30. I was advised by my cystic fibrosis specialists that I will lose the positive effects of the drug approximately one week after stopping. In just three short weeks, I am going to feel like my previous sick, debilitated self. I am so scared and am wondering why the Government of British Columbia, the (Automotive Retailers Association) and Sunlife Financial will allow this to happen.”

Verleg has been in touch with Vernon-Monashee MLA Eric Foster's office and staff have told her an attempt has been made to contact Health Minister Adrian Dix on the matter.

However, with time running out, she has gone public, urging people to share her post with Adrian Dix and their MLA. She hopes her efforts will convince the government to negotiate a cheaper price with the manufacturer so that it can be covered by the Medical Services Plan.

Cystic Fibrosis Canada (CFC) has also taken up Verleg's cause and that of Lilia Zaharieva, 30, a student at the University of Victoria who is the same situation.

“Orkambi is a life-changing drug for over 1,500 people across the country,” said Phil Norris, CFC spokesperson. “We need to bring this to the attention of the greater population.”

Norris said no province covers the costly drug for CF sufferers.

"They could be living a full life on this drug but they are being denied that.”



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