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BRAUN: Victoria begs Premier Wynne for her life
Liz Braun
Published:
May 3, 2018
Updated:
May 3, 2018 7:45 AM EDT
Hey, Kathleen Wynne, what the hell are you waiting for?
The people of Ontario want to know — do you intend to ignore kids with CF?
If you have the stomach for it, watch this video.
It’s a video of a teenaged girl named Victoria Vigneau begging you for the medication that will save her life.
How can you look away?
Victoria, like 4,200 other Canadians, has Cystic Fibrosis. She needs a drug called Orkambi to survive, but the Ontario government doesn’t want to talk about it.
Victoria, who is 15, is currently back in Sick Children’s Hospital as doctors attempt to clear her lungs of the thick mucus that builds up because of CF. That’s the reason she’s gasping during her plea to the premier — Victoria can’t breathe properly. It is, as a CF patient once told us, just like trying to breathe in a vat of glue.
The drug she needs, Orkambi, is expensive at around $250,000 a year — not nearly as expensive as that 1.1 billion gas plant scandal, but who’s counting? The government is probably hoping the high cost will put people off, but if not, there’s always the chance that Big Pharma will take the hit. How dare they charge so much!!! Etc.
Sorry, that won’t wash here. The price of Orkambi is a red herring. Canadians know that Orkambi has the potential to help fully half of all CF patients in this country. It will save their lives.
Victoria Vigneau, 15, (Supplied photo)
Canadians also know that governments all over the world have approved Orkambi for their CF population — even the U.S. is doing better than we are on this drug.
And Canadians know, as well, that the big four national private insurers are paying for Orkambi, so why won’t our government?
Bottom line?
“Cystic fibrosis is a progressive, fatal disease. People with CF don’t have time to wait.” So says Dr. John Wallenburg, Chief Scientific Officer at Cystic Fibrosis Canada. He continues, “Our governments need to step up and help these people now. Those with cystic fibrosis need to rely on more than their hope, they need be able to rely on their governments to make decisions that will help them live longer, healthier lives.”
Orkambi treats the genetic mutation behind CF, so when it works, it works well. It is a life-altering medication.
“If someone is prescribed medication that has the potential to save their lives, they should be able to access it,” says Jennifer Stranges, who is a communications officer with CF Canada.
Meanwhile, taxpayers in Ontario are paying between $200 million and $500 million on OHIP+
Ms. Wynne’s “free” medication for kids under 25 is now funding everybody, including the 50% of those kids who already had free or inexpensive meds through their parents’ workplace benefits.
It’s a fantastic waste of money. It’s money better spent on the meds required for kids with rare diseases.
Please, Ms. Wynne, stop funding my kids’ strep throat antibiotics or their poison ivy steroid cream — it was all paid for anyway under my employee benefits plan. You’re throwing away taxpayers’ money.
As Chris McLeod — chair of the Canadian Cystic Fibrosis Treatment Society — has already pointed out about OHIP+, it’s a waste of money. “I don’t understand why this government would waste millions of dollars paying for medications that were already being covered by private insurers when children suffering from a life-threatening disease can’t get access to the therapies they need. It’s a criminal waste of scarce health care resources.”
CF Canada now launches a national campaign that makes May Cystic Fibrosis Awareness Month. They are calling on the government to make life-changing medications accessible for those who need them.
The campaign is called, Let’s Hope; it features Canadians with cystic fibrosis sharing their hopes and fears, and calls on Canadians to give more than hope and support the mission of ending this disease. CF Canada hopes to show the government that Canadians support access to medication for people with CF. Canadians can also support the cause at their local Walk to Make Cystic Fibrosis History on May 27, 2018.
lbraun@postmedia.com
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BRAUN: Victoria begs Premier Wynne for her life | Toronto Sun