'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
More than 115 cases of eye damage reported in Ontario after solar eclipse
More than 115 people who viewed the solar eclipse in Ontario earlier this month experienced eye damage after the event, according to eye doctors in the province.
B.C. seeks ban on public drug use, dialing back decriminalization
The B.C. NDP has asked the federal government to recriminalize public drug use, marking a major shift in the province's approach to addressing the deadly overdose crisis.
Last letters of pioneering climber who died on Everest reveal dark side of mountaineering
George Mallory is renowned for being one of the first British mountaineers to attempt to scale the dizzying heights of Mount Everest during the 1920s. Nearly a century later, newly digitized letters shed light on Mallory’s hopes and fears about ascending Everest.
Orca calf that was trapped in B.C. lagoon for weeks swims free
An orca whale calf that has been stranded in a B.C. lagoon for weeks after her pregnant mother died swam out on her own early Friday morning.
Sophie Gregoire Trudeau on navigating post-political life, co-parenting and freedom
Sophie Gregoire Trudeau says there is 'still so much love' between her and Prime Minister Justin Trudeau, as they navigate their post-separation relationship co-parenting their three children.
'I was scared': Ontario man's car repossessed after missing two repair loan payments
An Ontario man who took out a loan to pay for auto repairs said his car was repossessed after he missed two payments.
Powerful tornado tears across Nebraska, weather service warns of 'catastrophic' damage
Devastating tornadoes tore across parts of eastern Nebraska and northeast Texas Friday as a multi-day severe thunderstorm event ramped up in the central United States, injuring at least three people.
Toxic testing standoff: Family leaves house over air quality
A Sherwood Park family says their new house is uninhabitable. The McNaughton's say they were forced to leave the house after living there for only a week because contaminants inside made it difficult to breathe.
Trump's lawyers try to discredit testimony of prosecution's first witness in hush money trial
Donald Trump's defence team attacked the credibility Friday of the prosecution's first witness in his hush money case, seeking to discredit testimony detailing a scheme between Trump and a tabloid to bury negative stories to protect the Republican's 2016 presidential campaign.