Melissa Verleg had the energy to fight for her life on the .

Only thanks to the drug Orkambi, which minimizes the devastating effects of cystic fibrosis which the Vernon woman battles.

Without Orkambi, Verleg wouldn香蕉视频直播檛 have been able to stand up in front of the crowd of 100 during the rally.

She would have been left gasping for air, unable to climb the steps, or share her story.

香蕉视频直播淚 was born with cystic fibrosis, for which there is no cure,香蕉视频直播� said the 34-year-old mother of two boys who has an 香蕉视频直播渁mazing香蕉视频直播� husband. 香蕉视频直播淐ystic fibrosis is a genetic disease which is going to kill me.香蕉视频直播�

She struggled for years, but in 2016 Orkambi halted the progression of the disease.

香蕉视频直播淚t has given me back my life that cystic fibrosis was slowly successfully robbing me of one shallow breath at a time,香蕉视频直播� Verleg, whose medication runs out in January as .

香蕉视频直播淚n just a few short weeks my supply of Orkambi will run out and I have no way of affording anymore.香蕉视频直播�

Which is why Verleg, joined by close to a dozen others with similar stories, including children, rallied Wednesday for the government to approve Orkambi under B.C. medical.

香蕉视频直播�The province of British Columbia has the ability to grant me the breath to live,香蕉视频直播� she said.

Without it, she fears her life will not only become more difficult, but will be cut short.

香蕉视频直播淢y children are going to have to go back to watching their mother struggle to breath, walk and read books to them. My children do not deserve this.

香蕉视频直播淚香蕉视频直播檒l lose precious days living life. I香蕉视频直播檒l go back to living a life barely worth living.香蕉视频直播�

So far, Verlegs efforts to lobby the government have not succeeded, but with added pressure she remains hopeful that Health Minister Adrian Dix will hear her plea, and the pleas of others suffering.

香蕉视频直播淚香蕉视频直播檓 here fighting for Orkambi. The government of British Columbia has let me down, it has let my sons down.香蕉视频直播�

Yet - there has been no response from Dix.

Also speaking at the rally was Vancouver香蕉视频直播檚 Leona Pinsky, CFC vice chair, who has been involved with CF Canada since her youngest child, Rina was diagnosed with CF at birth.

香蕉视频直播淐ystic fibrosis is the most common fatal genetic disease in Canada. At present there is no cure.香蕉视频直播�

Yet Orkambi is one drug that provides hope to people like Verleg. Hope which .

香蕉视频直播淚 find it unacceptable that he has told me he can not fund Orkambi because of the negative recommendation or even do a special authorization when he has done exactly that with Soliris for a lady down in Burnaby,香蕉视频直播� said Verleg, whose medication costs $250,000/year. 香蕉视频直播淪oliris also has a negative recommendation and costs $750,000 per year. He approved her to get the drug (last week). Here we are not being heard and I am going to run out of meds beginning of January. I don香蕉视频直播檛 understand why he doesn香蕉视频直播檛 see value in my life.香蕉视频直播�