Beeton girl continues fight for life-saving drug coverage
Published Tuesday, April 29, 2014 12:13PM EDT Last Updated Tuesday, April 29, 2014 7:09PM EDT
A young Beeton girl and her mother are at Queen’s Park today to continue their fight for coverage of life-saving drugs.
“We’re here to bring our plight again for Kalydeco and for the funding of this drug,” says Beth Vanstone.
Beth and her daughter Madi are fighting for coverage of a drug that could make the 12-year-old’s battle with a rare form of cystic fibrosis easier. Without it Madi's lungs fill up with fluid making breathing and walking impossible.
"I'm just frustrated with everything and I think they're emaking up stories and we can't wait," Madi says.
“We’re here to fight and bring it to the attention and get it moving,” Vanstone says.
Madi met with Ontario Premier Kathleen Wynne last month in an effort to persuade the government to cover Kalydeco. However, there’s been no change in the province’s stance on the drug and the family is looking for answers.
“We have to keep fighting,” Vanstone says. “I’m not willing to stop.”
She says it’s unclear whether their insurance company will cover the drug.
“I’m just frustrated with everything,” Madi says. “We’re trying to do this for everyone and we can’t wait. I don't think they're listening and I don't know what to say to make them listen."
The drug costs $349,000 a year and last month the premier promised Madi's family the provinces would work together to expedite the process and have the manufacturer lower the price. Madi's mom is frustrated over how long it’s taking and says time is running out for patients like her daughter.
“They're telling us they’re going to expedite things,” she says. “They're not. We don't have time to wait.”
Alberta is leading the negotiations with the American manufacture Vertex, which wants full price for the drug. That’s a cost Ontario's health minister says the provinces aren't willing to pay.
“We collectively wanted to underline with the drug company that we want to fund the drug but they need to work with us to find a fair price for it,” says Health Minister Deb Matthews.”
The opposition argues Kalydeco is a drug the province can afford to cover.
“While they have billions of dollars for scandals like gas plants, e-health, Orgne and yet they refuse to pay for a drug … for a 12-year-old girl who has a full life ahead of her as long as she's able to access this drug,” says MPP Jim Wilson.
Currently Madi's father's insurance plan through work covers 50 per cent of the drug and the manufacture covers 30 per cent, but only if there is insurance coverage.
But that insurance plan is under review meaning by June Kalydeco may no longer be covered.
“We would lose all funding at that point and then we'll watch her health go back to where it was,” says Vanstone. “It’s heart breaking.”
Health ministers are planning to meet with the manufacture to negotiate a price but a date hasn't been set and that worries Madi and her family. If the Vanstone's lose coverage for Kalydeco they say they will only be able to afford a month’s worth of the drug through money they have raised.