'She's gaining hope again': Ontario provides coverage for costly yet life-saving drug
Madi Vanstone is hoping that next week, she'll have access to a life-saving treatment for cystic fibrosis (CF) that has just been approved for coverage in Ontario.
On Friday, the Ontario Ministry of Health (MOH) announced that they would now provide coverage for Trikafta, a drug meant to treat CF patients that Madi’s mom, Beth Vanstone, calls “the golden goose.”
“[On Trikafta], people have come off of life support and out of their hospital beds and are back to work,” Vanstone told CTV News Toronto in July.
In June, Health Canada announced its approval of Trikafta, but the Pan-Canadian Pharmaceutical Alliance still had to negotiate pricing with manufacturer Vertex before getting the drug onto shelves and into the hands of patients.
Without coverage, the drug costs approximately US$300,000 a year per patient.
When the news came Friday that Ontario would provide coverage for the drug, Vanstone said Madi began sobbing immediately.
“She was so relieved and happy and excited,” Vanstone told CTV News Toronto on Saturday.
“I'm still literally vibrating from the news.”
Health Minister Christine Elliott addressed the news on Friday, saying the government took “urgent action” when it came to the issue
“Providing coverage for Trikafta is one more way our government is building a sustainable, modern and connected health-care system that will expand coverage to new and innovative treatments and provide high-quality health care to patients for years to come,” Elliott said.
Vanstone echoes that statement and praised Elliott’s efforts.
“The fact that Christine Elliot added this drug in a matter of a week, as soon as the ball was in her court, as soon as she had the ability to do that — she’s been a champion all along the way,” she said.
The chief scientific officer of Cystic Fibrosis Canada called Trikafta the "biggest innovation in cystic fibrosis treatment” and said that the drug could be effective in 90 per cent of patients.
In July, Dr. Anne Stephenson, Toronto respirologist and cystic fibrosis physician, told CTV News Toronto that some of her patients have been able to access Trikafta prior to the coverage announcement through a compassionate care program offered by Vertex. She says her patients feel “generally much better” when on the drug.
“We've seen a significant weight gain in patients, a significant reduction in hospitalizations and exacerbations … They don't cough as much anymore or they don't feel short of breath,” Stephenson said.
As far as daily changes in Madi’s life go, Beth is hoping to see improvement.
“I'm hoping for her energy to go up,” she said. “I can already, in this last day or so, see mental changes as she's gaining hope again.”
“Being able to stay out of the hospital and just work towards all the goals that she has for herself without having to worry about repeated hospitalizations is huge,” Vanstone said.
Madi has been hospitalized three times in the last nine months.
“The changes that this is going to make in people's lives, in patients and families lives — it's just so huge.”
With files from The Canadian Press.
CTVNews.ca Top Stories
BREAKING Iran fires at suspected Israeli attack drones near Isfahan air base and nuclear site
Iran fired air defences at a major air base and a nuclear site early Friday morning near the central city of Isfahan after spotting drones, which were suspected to be part of an Israeli attack in retaliation for Tehran's unprecedented drone-and-missile assault on the country.
NEW After hearing thousands of last words, this hospital chaplain has advice for the living
Hospital chaplain J.S. Park opens up about death, grief and hearing thousands of last words, and shares his advice for the living.
LeBlanc says he plans to run in next election, under Trudeau's leadership
Cabinet minister Dominic LeBlanc says he plans to run in the next election as a candidate under Prime Minister Justin Trudeau's leadership, amid questions about his rumoured interest in succeeding his longtime friend for the top job.
Prince Harry formally confirms he is now a U.S. resident
Prince Harry, the son of King Charles III and fifth in line to the British throne, has formally confirmed he is now a U.S. resident.
Trend Line Anger, pessimism towards federal government reach six-year high: Nanos survey
Most Canadians in March reported feeling angry or pessimistic towards the federal government than at any point in the last six years, according to a survey by Nanos Research.
DEVELOPING Israel targets air defence system in Syria, state news agency says
Israel carried out a missile strike targeting an air defence unit in southern Syria, causing material damage, state-run SANA news agency quoted a military statement as saying Friday.
Colin Jost names one celebrity who is great at hosting 'Saturday Night Live'
Colin Jost, who co-anchors Saturday Night Live's 'Weekend Update,' revealed who he thinks is one of the best hosts on the show.
NEW From window blinds to motorcycle helmets, here are the recalls in Canada this week
Here are the various items Health Canada recalled this week, including motorcycle helmets, power adapters, and bicycle cranksets.
Opinion 'Sasquatch Sunset' review: There won't be a weirder movie in theatres this year
Rare is the movie that can ride the line between scatological and sublime, absurdist and acute.