Drug company in Madi case hammers out deal
Madi Vanstone lays with her mother, Beth, at their home outside Beeton. Madi has cystic fibrosis and Beth pounds her chest and back for over 35 minutes, twice each day. (Stan Behal/Toronto Sun)
The company that makes the wonder drug Kalydeco announced Monday it has hammered out a deal with the Pan Canadian Pricing Alliance to allow the drug to be paid for by OHIP and other provincial drug plans.
Kalydeco is the costly drug cystic fibrosis patients such as 12-year-old Madi Vanstone need to stay alive.
Vertex warned this deal still requires provincial approval before patients will have their drugs covered.
“Before patients can get access through public reimbursement, each participating province or territory must decide to reimburse Kalydeco through its individual drug program,” Vertext spokesman Zach Barber said in a news release.
In Canada, there are approximately 100 people ages six and older with the specific mutation Kalydeco is effective in treating.
The announcement of the deal by Vertex comes after weeks of promises by Health Minister Deb Matthews that the province would pay for the drug.
More than a month ago, a news story said a deal had been made, which Vertex has always denied.
On June 3, the day of the debate between party leaders in the provincial election, Madi’s mom, Beth Vanstone, received a call from Matthews saying the drug would be funded “within weeks, not months.”
Last week, Vanstone was shocked to discover there was no deal with Vertex.
While the Beeton mom says she’s “thrilled” with this latest announcement, she says she has “trust issues” with the government after she was first told there was a deal, only to discover it didn’t exist.
She said there’s still a long way to go.
“I don’t know who to believe or what to believe,” she said Monday.
Now that Vertex has announced the agreement, Vanstone says she believes there’s a done deal — but says it’s just the first step on a long road to getting provincial approval.
“I don’t know how it’s going to be paid for or what the process is going to be. Until that’s worked out and we have the drug covered for Madi, I have a way to go before I’m going to believe it,” Vanstone said.
She pointed out that Matthews may not even be the health minister when Premier Kathleen Wynne appoints a new cabinet.
“I’m thrilled with this step, for sure, but I think there’s a little bit more work to be done before we can say we are in the clear,” she said.
Kalydeco costs $348,000 a year — and isn’t covered by OHIP.
Madi’s dad’s insurance pays 50% of her drug bill. The drug manufacturer picks up 30%. That leaves the family paying $60,000 a year to keep their daughter alive. Without the drug, she’ll need a lung transplant by her mid-teens — and that will only give her a few more years of life.
The family is not cancelling any more planned fundraisers because they have no idea when or if this province will approve payment of the drug.
A spokesman for Matthews said they are “extremely pleased” with the agreement.
“We are confident the ministry will move expeditiously to sign the contract with the manufacturer to make funding a reality, so that very soon, Ontarians affected by cystic fibrosis who qualify for this treatment will benefit from better health and a better quality of life,” Samantha Grant said in an e-mail.
“Again, we are talking about weeks, not months.”