Bradford’s Victoria Vigneau just wants to be a normal teenager.
The 15 year old struggles with daily chest pain, difficulty breathing, and forceful coughing fits as a result of her cystic fibrosis — essentially “drowning” in the excess mucus in her lungs.
But now she is in the fight of her life — to get the Health Canada-approved cystic fibrosis drug Orkambi covered by OHIP.
Currently, one year’s worth of the drug costs $250,000.
“If I was to have Orkambi, my life could change a great deal,” including easing chest pain and mucus build up and lowering the number of infections, said the Grade 10 Bradford District High School student.
“Orkambi would help me with staying out of the hospital, which for me is a big plus because as much as they treat me very well at SickKids, I'd much rather be in my own bed, be able to go to school every day and hang out with friends.”
A Facebook video Vigneau made to raise awareness of Orkambi has been viewed more than 400,000 times and shared by thousands of people.
“I am filming these videos with a fever to try and get your attention,” she said in the video, addressing Ontario Premier Kathleen Wynne. “You won’t take a meeting. You won’t take a call. You won’t email. You won’t do anything to help me?”
She and her mom, Carol Vigneau, recently visited Queen’s Park to speak about the issue and urge Wynne to meet with Orkambi’s makers to negotiate a price for OHIP coverage.
The drug is made to treat the delta F508 genetic mutation of the disease, which Victoria has and is the most common one for all people with cystic fibrosis, according to Cystic Fibrosis Canada.
During a recent question period, Wynne said her government empathizes with families and cited OHIP+, which started Jan. 1, as an example of its commitment to finding solutions for people with a variety of diseases.
“When OHIP+ came into effect, we were kind of glad because it said all people under age 25 were covered,” said Carol Vigneau. “Unfortunately, the drug that can give her a better quality of life is not covered.”
Orkambi was originally approved in Canada in January 2016.
Victoria Vigneau submitted a petition in support of having Orkambi covered by OHIP to York-Simcoe MP Peter Van Loan about a year ago, but nothing came of it. A friend of the family has since started a GoFundMe page to raise money to cover the cost of Orkambi for her.
Van Loan declined to comment for this story because health care is a provincial issue.
York-Simcoe MPP Julia Munro said she could not speak specifically about the Vigneau’s case because she has not met with them, but said “the government is faced with making decisions like this every day.”
“The current government position of free drugs for people under 25 will obviously have a lot of fine print to go with it,” she said. “It may widen the support, it may widen the choice, (but) it may not.”
Newton Robinson residents Beth Vanstone and her 16-year-old daughter, Madi Vanstone, who has cystic fibrosis, successfully fought for the drug Kalydeco to be covered by OHIP four years ago.
“Even if the drug holds the disease at bay, that’s a really good thing,” she said, adding Madi is “doing amazing (and) her health is outstanding” compared to before she had the drug.
She said she is frustrated so many cystic fibrosis patients and their families have to fight the provincial government so much to get new medication.
“When you have a drug that can change your child’s life and have it held up by bureaucracy, that’s the biggest disappointment,” she said. “The longer someone has (cystic fibrosis), the more costly it is for the government. If we can afford to provide these drugs to our sickest, then we should. Families shouldn’t have to be banging down the walls of Queen’s Park.”
For Victoria Vigneau, she has been in and out of the Hospital for Sick Children in Toronto since she was diagnosed at 18 months old. Each hospital stay is two weeks long, so she often misses weeks or months of school at a time.
Her mom accompanies her to the hospital each time and said it is difficult on their whole family.
“People don’t understand what it’s like to have a child with a serious illness. For a mom, having a child who you watch in a hospital bed — you feel helpless. They have extra mucus and they’re drowning in it,” she said, adding she also has three sons, none of whom have cystic fibrosis. “You miss a lot of time out of your other children’s lives as well.”
With May being National Cystic Fibrosis Awareness Month, the Vigneau’s hope Orkambi will be covered soon.
“I want people to realize that when it comes to Orkambi, they shouldn't be thinking about the money it will be costing them,” said Victoria Vigneau, “but the lives it could save, not only now but in the future.”
