All it would take is the stroke of a pen to breath life back into a Vernon woman battling cystic fibrosis, Vernon-Monashee香蕉视频直播檚 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香蕉视频直播檚 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.
香蕉视频直播淟ast December I had a pulmonary function test, it was at 58 per cent,香蕉视频直播� said Verleg, in between fits of coughing. 香蕉视频直播淪ince then I have been sick and lost 12 per cent of lung function.香蕉视频直播�
She has begged, pleaded and fought for support from both Vertex Pharmaceutical and the B.C. Ministry of Health, but to no avail.
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香蕉视频直播淚香蕉视频直播檓 just in limbo here waiting for someone to help me or get sick enough that I need a double-lung transplant,香蕉视频直播� said the Salmon Arm-born, Enderby-raised woman. 香蕉视频直播淚 will get there and I don香蕉视频直播檛 know how long I will be able to survive at that level.香蕉视频直播�
But now she has the support of Vernon-Monashee MLA Eric Foster.
香蕉视频直播淭his (Orkambi) made a huge difference in her life, she was able to live a life,香蕉视频直播� said Foster in a media conference at his office Tuesday. 香蕉视频直播淏ecause 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.
香蕉视频直播淔rankly I香蕉视频直播檓 disgusted with these people, playing with somebody香蕉视频直播檚 life.香蕉视频直播�
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香蕉视频直播檛 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.
香蕉视频直播淎 lady in Victoria, who is the same boat as Melissa, and a lady in Victoria, which is great,香蕉视频直播� said Foster. 香蕉视频直播淯nfortunately the won香蕉视频直播檛 give it to Melissa because they don香蕉视频直播檛 think she is sick enough香蕉视频直播�
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.
香蕉视频直播淗e told me that he knew I needed the drug to live but he wasn香蕉视频直播檛 going to fund it.香蕉视频直播�
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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香蕉视频直播檚 quality of life and it is the only drug that halted the progression of the disease.
香蕉视频直播淭his drug could stabilize me for a very long time,香蕉视频直播� said Verleg. 香蕉视频直播淚t could give me maybe 10 years.香蕉视频直播�
She was taking Orkambi for 18 months, just two pills, twice a day, 香蕉视频直播渢he easiest treatment I香蕉视频直播檝e ever been on.香蕉视频直播�
Since running out of her prescription she has developed cystic fibrosis-related diabetes.
香蕉视频直播淚 was sick within weeks.香蕉视频直播�
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.
香蕉视频直播淢y oldest struggles a lot. He wears that weight on his shoulder, he knows mom is really sick. It definitely affects them too.香蕉视频直播�
Orkambi is currently covered in many other countries around the world.
香蕉视频直播淲e are the last G7 country to fund Orkambi,香蕉视频直播� said Verleg. 香蕉视频直播淚香蕉视频直播檓 not sure what more evidence Canada wants that these other countries didn香蕉视频直播檛 need.香蕉视频直播�
Adds Foster: 香蕉视频直播淭his is just about money.香蕉视频直播�
jennifer@vernonmorningstar.com
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