She faced major hurdles in her rare disease fight. These barriers can cost lives, experts say [Video]

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 …