When Madi Vanstone was 11, she needed life-changing medication.
However, when she found it, it came with a catch: a hefty price tag that was not fully covered by insurance and not at all by the Ontario government.
Madi has a rare type of cystic fibrosis, a genetic condition that targets the digestive system and lungs. It can lead to a thick build up of mucous causing respiratory problems, lung infections and the gradual deterioration of the lungs, which could lead to transplants being required.
Madi, now 23, said she was told by doctors she would likely need a lung transplant by the time she turned 16.
“I was being poked and prodded a lot to treat reoccurring lung infections and digestive problems that are caused by my cystic fibrosis. Even at home, I was never really feeling great,” the Beeton, Ont., resident said.
When Madi was 11, a new drug came out that led to a massive change in her condition and meant she no longer needed a transplant.
Even though the drug brought her lung function back to that of a healthy child, it came with a $350,000 price tag.
“There’s a lot of other people that are struggling to gain access to their medications, and I don’t want them to have the same childhood that I did. I don’t think any kid should have to fight to survive,” Madi said.
Despite getting temporary partial coverage from their insurance and a discount from the drug manufacturer, they still faced around $100,000 a year out of pocket without the provincial government’s help.
“Our community fundraised to keep her on the drug for two years. We were sometimes attending two fundraisers a weekend and people were supporting us to keep her on the drug and … basically keep her alive until it was finally funded,” said Beth Vanstone, Madi’s mother.
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“If your loved one needs a drug to stay alive and have a better quality of life, they should be able to be insured, have access to that drug, and our country and provinces should be supporting that.”
The family advocated for two years before the Ontario government approved the treatment for coverage under the Ontario Drug Benefit program, Beth said.
When a better version of the drug came years later, they had to go through the whole process all over again.
“It’s pretty much been the same battle with every single treatment that’s come out. We just face the same problems every single time, and I think it’s just built up a lot of frustration, which is also driving me to continue,” Madi said.
Madi and Beth both said things could have gone differently without the community support they received.
“It’s not like Aspirin or a Tylenol where there’s another brand on the shelf. These therapies are the lifelines for patients and we need to ensure that patients have access to those,” Beth said.
“We’ve seen patients pass away months before drugs were approved in their province.”
Madi hopes her experiences will help bring awareness to not only the struggle people with cystic fibrosis face, but to all those battling rare diseases.
Madi and her mom are a part of a campaign called “I am Number 12,” aimed at bringing attention to the struggle people with rare diseases face trying to get treatment in Canada.
According to the Canadian Organization for Rare Disorders, at least one in 12 people in Canada are living with a rare disease, but only 60 per cent of treatments for rare disorders make it into the country.
The organization said the process for rare disorders to get approved is up to six years later when compared to the United States and Europe, meaning many Canadians may miss out on life-saving treatments.
The organization estimates 25 per cent of children with rare diseases die before the age of 10.
The Canadian Organization for Rare Disorders is calling for Canada to create a rare disease strategy to screen for and diagnose rare disease, as well as create a drug strategy for rare diseases.
“Even though I have the treatment that I need, I hope that when there’s a cure one day, I won’t have to fight to get it,” Madi said.
In response to criticism, the Ministry of Health said in a statement it has an established, evidence-based process for reviewing all requests for drug product funding under the Ontario Public Drug Programs, including drugs for rare diseases, and that it makes funding decisions based on the best available evidence.
“The ministry recognizes the unique difficulties that patients with a rare disease, and their families and caregivers, face. The ministry is involved in ongoing discussions with Health Canada, Canada’s Drug Agency and the pan-Canadian Pharmaceutical Alliance to improve access to rare disease therapies,” the statement reads.
Global News reached out to Health Canada but received no response before deadline.
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