BRAUN: What if Victoria were your daughter, Christine Elliott?
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It’s only February, but Victoria Vigneau has already had two hospitalizations this year.
Victoria is a vibrant young woman of 17, but cystic fibrosis has made her a regular at Sick Kids Hospital.
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BRAUN: What if Victoria were your daughter, Christine Elliott? Back to video
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Many readers know who Victoria is and have asked for an update on her health. It isn’t good. Like many of Canada’s CF patients, she needs Orkambi, the drug that will save her life.
Orkambi is a gene-altering drug from Vertex pharmaceuticals. Vertex makes four such CF drugs, the newest being Trikafta, hailed as a miracle medication.
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These drugs work, but they’re expensive. Nonetheless, at least 18 countries around the world, including Australia, Sweden, the U.K., Italy, Holland and the U.S. fund Vertex drugs for their CF population.
Canada continues to do nothing.
What will happen to Victoria? CF affects many organs and causes thick mucus to clog the lungs. As one CF teenager said, you’re literally drowning in mucus.
People with CF have constant lung infections and over time, the lungs are destroyed. Patients can get a severe, chronic cough; eventually, some begin to cough up blood.
Victoria was back in hospital because she was coughing up blood and needed surgery to make it stop. Doctors had partial success, but were unable to work on all the affected blood vessels. Too dangerous.
“They told me, ‘This could mean your daughter’s life,'” says Victoria’s mother, Carol Vigneau.
“No parent should ever have to hear those words.”
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After two years of fighting for Orkambi, Carol and Victoria are no further ahead. Leading CF doctors are among those imploring federal and provincial leaders to facilitate a deal with the drug’s manufacturer, Vertex, but Canada isn’t even negotiating.
CF parents have literally begged Ontario Christine Elliott, Ontario’s Minister of Health, to get the Vertex negotiations underway.
Asked for a statement, Elliott’s office returned the usual meaningless political blather about, “continuously reviewing evidence … the funding of new medications,” and the like.
Stonewall central.
Your tax dollar at work.
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