The month of May is Cystic Fibrosis Awareness Month.
It’s a chance for all Canadians to support the mission of ending this disease.
And another chance for Kathleen Wynne to ignore the pleas of CF patients.
Kids with cystic fibrosis have been begging the Ontario government to fund the drugs that will save their lives.
Victoria Vigneau, about whom we have written before, has been petitioning Wynne to step up for months.
An opportunity presented itself last week when Wynne went to Sick Children’s Hospital to make campaign promises at a press conference. Victoria was at Sick Kids too — but as a patient. She is frequently hospitalized (four times last year) so that the symptoms of her disease can be treated.
(With CF, her lungs are overwhelmed by mucus. It feels like drowning. Thanks for asking.)
This teenager has written letters to the government, got her MPP to appeal to the premier’s office, has faced Wynne personally in the legislature during question period, begged her via Facebook, and done whatever is humanly possible to persuade Wynne to fund a drug called Orkambi.
It is a drug that can help the majority of CF patients. It can help Victoria.
When Victoria found out that Wynne would visit Sick Children’s Hospital, she got herself out of her hospital bed, pulling her IV pole behind her, and got on the elevator to get to see the premier in person. Talk to her, maybe. Get some answers.
Victoria felt sure that in such a setting, Wynne couldn’t possibly ignore her — again.
She was wrong.
“She never acknowledged her,” says Carol Vigneau, a soft-spoken Cape Bretoner who is Victoria’s mother.
“She just looked at her and smiled and walked right by her.”
There’s no question that Kathleen Wynne knows who Victoria Vigneau is. The teen has been written up in various newspapers over this issue, has posted a video appealing to Wynne that has received hundreds of thousands of views.
Right now, Victoria’s health has been improved by her two-week stay at Sick Children’s Hospital. She’s back home. Her mother worries nonetheless.
“I’m afraid we’re on the same road as last year,” says Carol Vigneau.
“She’d be in hospital for two weeks, then home for a month, then back in for two weeks. She had four hospitalizations last year, three of them within three months. Then one more in September, just after school started.”
The cost of those hospitalizations would vanish, of course, if Victoria had access to Orkambi. The drug costs close to $250,000 a year, but it doesn’t seem to have occurred to any governmental bean counters that this figure is cheaper in the long run than all the hospitalizations and other therapies that go with keeping the symptoms of CF at bay.
“When your child is sick, the only thing that matters is getting them the best care.”
Carol Vigneau would agree, but she didn’t say that.
Kathleen Wynne said that on Twitter back in March.
What Carol Vigneau did say is how much Victoria had hoped Wynne would speak to her.
“What gets me is that Kathleen Wynne used to be a teacher,” says Carol.
“If I was the one up for the re-election, then I would stop to talk to people, even children. They are the voice of our future.”
Not surprisingly, there’s a gofundme page set up to finance Victoria’s much-needed Orkambi. You can contribute at: https://www.gofundme.com/victoriasfightfororkambi
You can join the fight by clicking here to take part in a CF fundraising walk on May 27.
Source:: Toronto Sun – Movies