Melissa Verleg had the energy to fight for her life on the steps of the B.C. Legislature Wednesday.
Only thanks to the drug Orkambi, which minimizes the devastating effects of cystic fibrosis which the Vernon woman battles.
Without Orkambi, Verleg wouldn’t 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.
“I was born with cystic fibrosis, for which there is no cure,” said the 34-year-old mother of two boys who has an “amazing” husband. “Cystic fibrosis is a genetic disease which is going to kill me.”
She struggled for years, but in 2016 Orkambi halted the progression of the disease.
“It has given me back my life that cystic fibrosis was slowly successfully robbing me of one shallow breath at a time,” Verleg, whose medication runs out in January as insurance coverage has been cut.
“In just a few short weeks my supply of Orkambi will run out and I have no way of affording anymore.”
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.
”The province of British Columbia has the ability to grant me the breath to live,” she said.
Without it, she fears her life will not only become more difficult, but will be cut short.
“My 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.
“I’ll lose precious days living life. I’ll go back to living a life barely worth living.”
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.
“I’m here fighting for Orkambi. The government of British Columbia has let me down, it has let my sons down.”
Yet – there has been no response from Dix.
Also speaking at the rally was Vancouver’s Leona Pinsky, CFC vice chair, who has been involved with CF Canada since her youngest child, Rina was diagnosed with CF at birth.
“Cystic fibrosis is the most common fatal genetic disease in Canada. At present there is no cure.”
Yet Orkambi is one drug that provides hope to people like Verleg. Hope which the government is crushing.
“I 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,” said Verleg, whose medication costs $250,000/year. “Soliris 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’t understand why he doesn’t see value in my life.”