The Ontario government has responded to a 12-year-old girl’s plea for help and will fund a costly drug to treat her cystic fibrosis, the child’s mother says.
Madi Vanstone of Beeton, Ont., and her mother Beth have been lobbying for months to get Kalydeco on the list of drugs covered by the Ontario Health Insurance Plan (OHIP).
Kalydeco costs $350,000 a year, and the Vanstones have been paying for the drug with the help of donations from a community fundraising initiative.
But late Tuesday afternoon, Beth Vanstone told CTV Barrie she got a call from Health Minister Deb Matthews, who told her that OHIP will now cover 100 per cent of the drug’s costs for all patients that need it.
“It’s huge,” Vanstone said of the news. “I’ve said before that having a child that’s sick and feeling like you’re in a battle every day is a hard life. It’s really hard.”
Madi, 12, began taking the drug last August, Vanstone said, and her health improved immediately.
“It was a big weight lifted because she was going to be okay,” Vanstone told CTV on Wednesday. “However, we stepped from one battle to the next looking for funding and fighting for funding.”
Cystic fibrosis is characterized by a thick mucus that covers the lungs, pancreas and other organs. One in every 3,600 children is born with the disease, according to Cystic Fibrosis Canada.
When Madi was at her sickest, her mother said, her pancreas had stopped working, her lung function was “down substantially,” and she had daily head- and stomach-aches.
Now that Madi is on Kalydeco, “Her body works like everyone else’s now,” Vanstone said. “It’s really amazing that they’ve come this far with research and they’re able to do that for her.”
Madi said she is “so excited” by the news.
“I was scared because I didn’t know what would happen,” Madi told CTV. “They could say no, or they could say yes. And you didn’t know for sure, so you were always worried, what if they say no? But that’s not going to happen anymore.”
Madi said she “knew the fundraising couldn’t go on forever,” and was afraid that when the donations ran out she would have to stop taking the drug.
“I’m just going to chill for a while and get my energy back because I’m exhausted from all of it,” Madi said, when asked what she will do now that her lobbying work is done. “And then I’m going to have a good time and I’m not going to worry anymore.”
The news comes days after the Alberta government announced it had reached a tentative deal with the drug’s maker, Vertex Pharmaceuticals, on behalf of all provinces so they could purchase the medication at an affordable price.
The family will donate any remaining donations to local community groups that need help, she said.
