Cystic fibrosis patients plea for B.C. government to cover new drug they say has changed their lives

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      Cystic Fibrosis Canada has launched a campaign that targets the B.C. government, asking the province to cover a drug that the nonprofit organization says can significantly improve the lives of many people who take it.

      “Orkambi changed my life,” says Melissa Verleg, a resident of Vernon, quoted in a Cystic Fibrosis Canada media release. “I can do everyday things again: cook and prepare meals for my family, clean my own house, but most of all, my children have their mother back and my husband has the wife back that he was missing.”

      “I am terrified of what will happen when I run out of Orkambi,” the mother of two continues. “I don’t want to go back to being a spectator in life.”

      Cystic fibrosis is a genetic disease that primarily affects the digestive system and lungs, causing infections that can be fatal. More than 4,000 Canadians are diagnosed with the disease. An estimated 150 of those patients reside in B.C.

      Health Canada approved Orkambi for the treatment of cystic fibrosis in January 2016. The pill is a combination of the drugs lumacaftor and ivacaftor and has been proven effective for the treatment of a specific type of cystic fibrosis that effects about 80 percent of people with the disease.

      So why doesn’t the provincial government cover it? B.C. PharmaCare maintains there is “insufficient evidence” of the drug’s effectiveness. Another reason, however, could be the price of the drug. It’s expensive, costing roughly $250,000 per patient per year.

      "We understand that quality of life for people with cystic fibrosis can be a significant challenge and it is important that these patients get the treatment they need," a spokesperson for B.C.’s ministry of health told CBC News for a story about Orkambi the network ran last March

      Without provincial coverage for Orkambie, its left up to private insurers to help patients pay for drugs, and insurance companies in B.C. have similarly said they won’t foot the bill.

      Cystic Fibrosis Canada wants to change that.

      “Because of Orkambi, for the first time in my life I can get through a day with energy, a smile, and fuller breath,” says a second patient, Lilia Zaharieva, who's a student at the University of Victoria. “It feels like someone has lifted a heavy load that I have been carrying all my life, and I wish this relief for everyone fighting Cystic Fibrosis in British Columbia.

      "Since I have been on Orkambi, I have dared to plan for my future for the first time ever,” she says quoted in the media release. “It is not a cure, but now I have time to breathe. You can't put a price on that.”

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