Madi Vanstone has a rare form of Cystic Fibrosis (CF) and requires a life-saving drug, Kalydeco, to keep her breathing
Credits: Supplied photo
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.
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.
Madi is battling a deadly disease. Within 30 days of going on the drug, she was negative for symptoms and her lung capacity had improved 100%.
Without the drug, Madi's lung function was declining. She'd probably need a lung transplant by her mid-teens - and that would only give her another five years.
"The thought of having to take her off it ... you don't know how terrifying that is," Beth said, her voice trailing off. "It's saving her life, saving her lungs."
Madi made remarkable progress with the drug. Within 30 days, diagnostic tests for CF were negative as the drug corrects the defect in her body. Her lung function increased from 78% of expected value to
111% of expected value.
But the province adamantly won't pay.
But we do have enough money to pay the very generous Ontario Drug Benefit Plan for people here as refugee claimants and those awaiting deportation.
Are we nuts?
In her news release, Health Minister Deb Matthews said she will send the bill to the feds. That's nervy, but out of line. If the feds decide to cut spending, then the province shouldn't shame them into changing their mind.
Let refugee claimants hold bake sales for their health care, as Madi's family has done.
In that release, Dr. Phillip Berger, of St. Michael's Hospital and a member of Canadian Doctors for Refugee Care, said sick children and pregnant women can't get care and cancer patients are denied chemotherapy.
If doctors care that much, they can treat refugees for free.
Madi and other patients needing coverage for their care will be at Queen's Park Tuesday making their case.
The argument that we can't afford it no longer holds water, not as long as our government is throwing money at refugee claimants.
We can pay for refugee health care when our $13-billion deficit is erased - and when our $250-billion accumulated debt has disappeared.
Until then, let them bake cakes.