Battle for Cystic Fibrosis medication
[projekktor id=’11743′]
(Updated) A 12 year old girl was at Queen’s Park Monday asking the premier to help save her life.
Madi Vanstone has Cystic Fibrosis. An expensive new drug keeps her free of symptoms, but Canada hasn’t agreed to a price with the drug manufacturer, so the drug isn’t yet covered by our health care system. But the opposition says we shouldn’t be putting a price on a child’s life.
Madi glowed as her friends gathered for a photo on the Queen’s Park staircase. They’ve been raising money for her, and they’re here for her… but she’s also here for them.
“It’s incredible how much support I’ve been getting. I’m really happy but I wish my community and friends didn’t have to do it. I appreciate it a lot but they don’t have to do it if the government could cover it.”
Madi’s talking about the drug she’s been taking for seven months. Kalydeco was approved in 2012 for people with a particular Cystic Fibrosis gene mutation, but even after insurance and discounts, it costs her family almost $6,000 a month.
“Before, I was always tired. I couldn’t go up the stairs. I didn’t have energy, I had head, belly aches all the time. Now that’s gone. I can go up the stairs no problem, I can play with my friends. I can do sports and I feel so much better.”
In a letter to Kathleen Wynne, Madi said she was scared that one day the fundraisers would end and she’d lose the drug. She wrote that she thought she was a good person, and deserved to live.
Conservative Jim Wilson is Madi’s MPP. “Last year when Madi wasn’t on Kalydeco she missed 96 days of school, 28 days hospital, constant head and stomach aches, her lung capacity functioned at 79 per cent at best, and without Kalydeco her docs say she will need a lung transplant by her mid-teens. And even then the disease would continue to attack her new lungs.”
Madi’s mother Beth explains why Kalydeco is different. “The other drugs treat symptoms of CF. This drug actually corrects at the cellular level, so when she’s on Kalydeco she no longer tests positive for Cystic Fibrosis”
The Vanstones met with the premier but came away with few answers.
“Ultimately, it still comes down to price. I explained I didn’t think we could put a price on kids’ lives.”
Alberta is negotiating on behalf of Canada with the Boston drug manufacturer, but health minister Deb Matthews says so far, three offers have been declined. “we need a price that’s fair, and this company, Vertex, has not been prepared to negotiate.”
Madi’s mother is planning another fundraiser for St Patrick’s Day while they wait out those negotiations.
