All it would take is the stroke of a pen to breath life back into a Vernon woman battling cystic fibrosis, Vernon-Monashee91裸聊视频檚 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.
It91裸聊视频檚 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.
91裸聊视频淟ast December I had a pulmonary function test, it was at 58 per cent,91裸聊视频� said Verleg, in between fits of coughing. 91裸聊视频淪ince then I have been sick and lost 12 per cent of lung function.91裸聊视频�
She has begged, pleaded and fought for support from both Vertex Pharmaceutical and the B.C. Ministry of Health, but to no avail.
See related:
91裸聊视频淚91裸聊视频檓 just in limbo here waiting for someone to help me or get sick enough that I need a double-lung transplant,91裸聊视频� said the Salmon Arm-born, Enderby-raised woman. 91裸聊视频淚 will get there and I don91裸聊视频檛 know how long I will be able to survive at that level.91裸聊视频�
But now she has the support of Vernon-Monashee MLA Eric Foster.
91裸聊视频淭his (Orkambi) made a huge difference in her life, she was able to live a life,91裸聊视频� said Foster in a media conference at his office Tuesday. 91裸聊视频淏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.
91裸聊视频淔rankly I91裸聊视频檓 disgusted with these people, playing with somebody91裸聊视频檚 life.91裸聊视频�
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 isn91裸聊视频檛 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.
91裸聊视频淎 lady in Victoria, who is the same boat as Melissa, and a lady in Victoria, which is great,91裸聊视频� said Foster. 91裸聊视频淯nfortunately the won91裸聊视频檛 give it to Melissa because they don91裸聊视频檛 think she is sick enough91裸聊视频�
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.
91裸聊视频淗e told me that he knew I needed the drug to live but he wasn91裸聊视频檛 going to fund it.91裸聊视频�
See related:
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 Verleg91裸聊视频檚 quality of life and it is the only drug that halted the progression of the disease.
91裸聊视频淭his drug could stabilize me for a very long time,91裸聊视频� said Verleg. 91裸聊视频淚t could give me maybe 10 years.91裸聊视频�
She was taking Orkambi for 18 months, just two pills, twice a day, 91裸聊视频渢he easiest treatment I91裸聊视频檝e ever been on.91裸聊视频�
Since running out of her prescription she has developed cystic fibrosis-related diabetes.
91裸聊视频淚 was sick within weeks.91裸聊视频�
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.
91裸聊视频淢y oldest struggles a lot. He wears that weight on his shoulder, he knows mom is really sick. It definitely affects them too.91裸聊视频�
Orkambi is currently covered in many other countries around the world.
91裸聊视频淲e are the last G7 country to fund Orkambi,91裸聊视频� said Verleg. 91裸聊视频淚91裸聊视频檓 not sure what more evidence Canada wants that these other countries didn91裸聊视频檛 need.91裸聊视频�
Adds Foster: 91裸聊视频淭his is just about money.91裸聊视频�
jennifer@vernonmorningstar.com
Like us on and follow us on .
