Life-saving drug not covered for girl, 12

Madi Vanstone has a rare form of Cystic Fibrosis (CF) and requires a life-saving drug, Kalydeco, to...

Madi Vanstone has a rare form of Cystic Fibrosis (CF) and requires a life-saving drug, Kalydeco, to keep her breathing. (Supplied photo)

Christina Blizzard, QMI Agency

, Last Updated: 6:06 PM ET

TORONTO — Little Madi Vanstone, 12, is one beautiful child — with a major health problem.

She has a rare form of Cystic Fibrosis and requires a life-saving drug, Kalydeco, to keep her breathing.

The big problem is the drug costs $348,000 a year — and it's not covered by OHIP, Ontario’s public insurance system.

Madi's mom, Beth, gave up work when her daughter was diagnosed with CF at eight months of age.

"You can't hold down a job and have a baby in Sick Kids," Beth told me recently. "We made some lifestyle changes."

Madi's dad, Glen, a pipefitter, has insurance benefits that pay for 50% of her drug bill. The drug manufacturer picks up 30%, but that leaves the family paying $5,770 a month to keep their daughter alive.

Folk in their small community near Bradford have rallied around Madi.

Local kids walked dogs all summer to raise money. A fundraising gala made $21,000.

Celtic tenor John McDermott put on a concert.

The local church held a soup kitchen.

They did what Canadians have done for generations — pulled together to help a child in need.

That's what makes Monday's announcement by the provincial health ministry so galling.

This province is trying to shame the feds into reinstating care for refugee claimants.

Really?

We can't even afford life-saving drugs for a child who has lived in this province all her life. Whose family has paid taxes for generations.

But in a foot-stamping, blame-the-feds act of cynicism, apparently we have enough money to pay for health care for refugee claimants.

When I came here, I was just glad to be accepted into a country that is full of so much hope and promise. This is the land that was built on the sweat of can-do people who came looking for work — not handouts.

At a time when our health-care system is failing children like Madi, there's no way we should be expanding coverage for refugee claimants.


Videos

Photos