All it would take is the stroke of a pen to breath life back into a Vernon woman battling cystic fibrosis, Vernon-Monashee’s MLA says.
Melissa Verleg lost access to a medication called Orkambi on Jan. 20. With it, she lost the ability to perform even the simplest of tasks such as cooking dinner and playing with her kids.
It’s a daily struggle just to breathe for the 34-year-old wife and mother of a seven and nine-year-old, who cannot afford the $20,000 monthly cost of Orkambi.
“Last December I had a pulmonary function test, it was at 58 per cent,” said Verleg, in between fits of coughing. “Since then I have been sick and lost 12 per cent of lung function.”
She has begged, pleaded and fought for support from both Vertex Pharmaceutical and the B.C. Ministry of Health, but to no avail.
“I’m just in limbo here waiting for someone to help me or get sick enough that I need a double-lung transplant,” said the Salmon Arm-born, Enderby-raised woman. “I will get there and I don’t know how long I will be able to survive at that level.”
But now she has the support of Vernon-Monashee MLA Eric Foster.
“This (Orkambi) made a huge difference in her life, she was able to live a life,” said Foster in a media conference at his office Tuesday. “Because of a power struggle between a major pharmaceutical company and the minister of health in the province of British Columbia, her health is deteriorating every day and they could fix it if they want to.
“Frankly I’m disgusted with these people, playing with somebody’s life.”
Foster is pressuring both Dix and Vertex to put policy and politics aside and help.
Vertex has made another effort to get the drug listed under the common drug review, but that falls under federal jurisdiction and a decision isn’t expected until Aug. 1, with a formal process expected to take up to another year until it is approved in B.C.
In the meantime, there have been exceptions made for people desperately needing medical coverage, and Foster demands the same for Verleg.
“A lady in Victoria, who is the same boat as Melissa, and a lady in Victoria, which is great,” said Foster. “Unfortunately the won’t give it to Melissa because they don’t think she is sick enough”
He also points to the case of a lady in Vancouver who needed Soliris, which costs $750,000 a year, which Dix made a ministerial decision to approve coverage of for a year.
Verleg even spoke to Dix last fall, prior to rallying on the front steps of the Legislature.
“He told me that he knew I needed the drug to live but he wasn’t going to fund it.”
In the meantime, she gets sicker every day and says even one cold could essentially kill her.
While it was not a cure-all, Orkambi made a drastic difference in Verleg’s quality of life and it is the only drug that halted the progression of the disease.
“This drug could stabilize me for a very long time,” said Verleg. “It could give me maybe 10 years.”
She was taking Orkambi for 18 months, just two pills, twice a day, “the easiest treatment I’ve ever been on.”
Since running out of her prescription she has developed cystic fibrosis-related diabetes.
“I was sick within weeks.”
She can hardly sleep as she lays there coughing because her lungs are so weak and filled with mucus.
And her family wears the burden of her disease, with her husband caring for her and her children seeing mommy so sick.
“My oldest struggles a lot. He wears that weight on his shoulder, he knows mom is really sick. It definitely affects them too.”
Orkambi is currently covered in many other countries around the world.
“We are the last G7 country to fund Orkambi,” said Verleg. “I’m not sure what more evidence Canada wants that these other countries didn’t need.”
Adds Foster: “This is just about money.”