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Brave Madi's plea falls on premier's deaf ears

By Christina Blizzard, Special to the Sun

Madi Vanstone, her mom Beth and 50 school children at Queen's Park in Toronto to appeal to Premier Kathleen Wynne to fund a necessary cystic fibrosis drug Monday March 3, 2014. (Stan Behal/Toronto Sun)

Madi Vanstone, her mom Beth and 50 school children at Queen's Park in Toronto to appeal to Premier Kathleen Wynne to fund a necessary cystic fibrosis drug Monday March 3, 2014. (Stan Behal/Toronto Sun)

TORONTO - 

There was a poignant moment at a Queen’s Park news conference Monday that put everything in perspective.

Little Madi Vanstone was here to plead for the government to pay for a drug that’s saving her life.

She’s a tiny girl for a 12-year-old. She has a small voice but, oh my, can she express herself.

As she carefully outlined her illness and how the drug is keeping her breathing, I heard a small sound.

It was one of my colleagues, a longtime TV cameraman who’s shot everything from hostage takings to body parts being loaded into a coroner’s van.

He was quietly sobbing.

Then I noticed most reporters had tears in their eyes as we listened to this bright little girl with sparkling eyes tell us she desperately needs the government to step up.

It was one of those rare moments when everything came to a standstill.

Madi’s message is simple.

She has cystic fibrosis. She needs Kalydeco, a wonder drug that’s helping her battle this dreadful disease.

With the drug, she’s symptom free.

After Madi’s letter asking Kathleen Wynne to meet with her appeared in Sunday’s edition of the Toronto Sun, the child was invited to the premier’s second-floor office.

When I heard that, I thought for sure the government had finally grown a heart, grown a spine and was about to pay for Madi’s drugs.

But no.

There’s a whole lot of nuthin’ going on in the corner office.

Madi came out smiling and hopeful, but you could tell by the worried look on mom Beth’s face that all wasn’t resolved.

The price of the drug would have to come down significantly in Canada before the government would commit to paying for it, the premier told her.

So what price do you put on a child’s life?

Beth says the price she’s paying — $348,000 annually — is significantly lower than the $450,000 a year that Germany is paying.

“There are 11 other countries that have managed to negotiate prices to save the lives of the CF patients,” she told reporters.

This won’t open the floodgates. It’s a rare disease and funding every child with this affliction would cost the province only $8 million annually.

But the government that blew $700 million on Ornge, $1.1 billion to scrap two gas plants and another $1 billion on eHealth apparently can’t find $8 million for children who can’t breathe without the medication.

Heck, you could just take the cool half a million in severance they paid former Pan Am Games honcho Ian Troop and you’d have a year and a half of drugs for Madi right there.

We all understand the need to negotiate the best price.

But this government’s a tad late coming to that table.

In a written statement, Health Minister Deb Matthews had this to say:

“Negotiations for Kalydeco are being led by Alberta through the Pan-Canadian Pricing Alliance. Alberta has made three proposals to the manufacturer (Vertex) and they have rejected each one,” Matthews said.

“We need Vertex to step up and be a strong partner in these negotiations so we can help patients like Madi.

“Any decision that is made on which drugs to fund are difficult because there is so much at stake. However, decisions about which drugs to fund should be made by experts to ensure that the products we do fund are in the patient’s and public’s best interest,” she said.

A spokesman for Boston-based Vertex would not comment on the negotiations.

“During the course of these discussions, multiple different proposals have been made by both sides — Vertex and the government. While we have not yet reached an agreement, we remain hopeful that Kalydeco will be publicly reimbursed across Canada — as it is in many countries around the world — so that eligible people with CF can receive this medicine as soon as possible,” said Zach Barber, via e-mail.

I was out of my office during the day. When I returned, I found a tin full of cupcakes and a note from Madi thanking me for her help. It broke my heart.

What a class act. What a lovely girl. What a great family.

Why is her government failing her?


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