When Madi Vanstone was 11 years old, she needed medication that changed her life.
However, when she found it, he came with a problem: a high price which was not entirely covered by insurance and not at all by the government of Ontario.
Madi has a rare type of cystic fibrosisA genetic condition that targets the digestive system and the lungs. It can lead to thick mucosa accumulation Corporating respiratory problems, pulmonary infections and the gradual deterioration of the lungs, which could cause necessary transplants.
Madi, now 23, said that she had been informed by doctors that she would probably need a pulmonary transplant when she was 16 years old.
“I was in the process of being pushed and pushed a lot to treat recurring pulmonary infections and the digestive problems caused by my cystic fibrosis. Even at home, I never felt really good, “said Beeton’s resident in Ontario.
When Madi was 11 years old, a new medication was released which led to a massive change in his state and meant that she no longer needed a transplant.
Even if the drug brought back its pulmonary function to that of a healthy child, it came with a price of $ 350,000.
“There are many other people who find it difficult to access their drugs, and I don’t want them to have the same childhood as me. I don’t think a child should fight to survive, “said Madi.
Despite obtaining a temporary partial coverage of their insurance and a discount of the drug manufacturer, they still faced $ 100,000 per year without the help of the provincial government.
“Our community has collected fundraising to keep it on drugs for two years. We sometimes attend two fundraising per weekend and people supported us to keep it on drugs and … keep it alive until it was finally funded, “said Beth Vanstone, Maddi’s mother .
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“If your loved one needs a drug to stay alive and have a better quality of life, it should be assured, have access to this drug, and our country and our provinces should support it.”
Beth and his daughter Madi Vanstone.
Deleted by Beth Vanstone
Constantly fight “the same battle”
The family pleaded for two years before the Ontario government approached the coverage treatment as part of the Ontario drug services program, said Beth.
When a better version of the drug came for years later, they had to resume the whole process.
“It is roughly the same battle with each treatment that has come out. We simply encounter the same problems every time, and I think it has just been a lot of frustration, which also pushes me to continue, “said Madi.
Madi and Beth both said that things could have gone differently without the community support they received.
“It is not like aspirin or a tylenol where there is another brand on the shelf. These therapies are patients of patients and we must make sure that patients have access to them, “said Beth.
“We saw patients die months before medicines were approved in their province.”
Madi hopes that his experiences will help to raise awareness not only of people struggles that people with cystic fibrosis are confronted, but also to all those who fight against rare diseases.
Maddi and her mother are part of a campaign entitled “I am number 12”, aimed at drawing attention to the struggle that people with rare diseases face an attempt at Canada.
According to the Canadian organization for rare disorders, at least one in 12 people in Canada live with rare disease, but only 60% of treatments for rare disorders make the country.
The organization said that the process of unrest to be approved is up to six years later compared to the United States and Europe, which means that many Canadians could lack vital treatments.
The organization estimates that 25% of children with rare diseases die before the age of 10.
The Canadian organization for rare disorders calls Canada to create a rare disease strategy to detect and diagnose rare diseases, as well as to create a drug strategy for rare diseases.
“Even if I have the treatment I need, I hope that when there will be a remedy one day, I will not have to fight to get it,” said Madi.
In response to criticism, the Ministry of Health said in a statement that it had a process established and based on evidence to examine all requests for financing drug products in the context of Ontario Public Medicines Programs , including drugs for rare diseases, and that it makes funding decisions based on funding decisions based on the best available evidence.
“The ministry recognizes the unique difficulties that patients with a rare disease, as well as their families and caregivers are confronted. The ministry is involved in current discussions with Health Canada, the Canada Medicines Agency and the Pan-Canadian Pharmaceutical Alliance to improve access to therapies with rare diseases, “the statement said.
Global News contacted Health Canada but received no response before the deadline.
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