Blizzard

Ontarians step up for Madi while government fails

By Christina Blizzard, Special to the Sun

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

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

Toronto - 

What was that Charles Dickens said about the best of times and the worst of times?

It came to mind Tuesday, when little Madi Vanstone came to Queen’s Park from her home near Bradford, asking for something very simple, yet tragically illusive for her.

She wants her health. She wants to breathe. She simply wants to survive.

Is that too much to ask in a province where half our taxes go to health care?

For Madi, life is a struggle — especially since the government won’t fund the life-saving drugs she needs.

I wrote about her earlier this week. Madi suffers from a rare form of cystic fibrosis. She desperately needs a life-saving drug, Kalydeco, to keep her breathing.

The drug costs $348,000 a year — and it’s not covered by OHIP.

Dad Glen has benefits at work 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.

With the wonder drug, the prognosis for Madi is good. Within 30 days, diagnostic tests for CF were negative. Her lung function increased from 78% of expected value to 111% of expected value.

Without the drug, she’ll need a lung transplant in her mid-teens. That will only give her another five years.

That’s the worst of times.

The best of times is the way you rallied.

Since that column ran, the response has been overwhelming.

My e-mail inbox flooded with readers wanting to help.

Madi’s mom, Beth, is fighting like a lion for her daughter.

She hasn’t heard from Health Minister Deb Matthews, but the response from others has been “amazing,” she said.

“People are outraged, as they should be,” Beth said.

That, too, is the best of times. People understand how outrageous this is, that a beautiful young child with every right to expect a bright future — or any future — is being denied the funding she needs to save her life.

Ironically, that same afternoon, provincial auditor Bonnie Lysyk delivered her damning report on the outrageous excesses at Ontario Power Generation. That’s the worst of times.

The government is hiding behind their Committee to Evaluate Drugs, an Orwellian-sounding, bureaucratic hurdle they built between patients, their doctors and the drugs they need.

I asked Premier Kathleen Wynne this week whether the government would fund Madi’s treatment.

First I got the “I understand your pain” lip service to caring.

“This is a very painful situation and my heart goes out to the family,” Wynne said.

“I think that it’s been very clear that our position is we must have scientific and objective measures in place and mechanisms to make decisions about the coverage of drugs and the efficacy of drugs.

“These must not be political decisions that are made by individual politicians, individual premiers or individual health ministers.”

I disagree. We elect politicians to take responsibility for how they spend our tax dollars. This government is shirking that responsibility and leaving sick children suffering.

Tory MPP Ted Chudleigh, who brought Madi and other patients to Queen’s Park, says it’s a cop-out.

“The government has abdicated all responsibility by the ministers and given it to faceless bureaucrats,” he told me.

Madi needs help — now. The committee doesn’t respond quickly enough. They weigh things like cost effectiveness, instead of the simple humanity of stopping a child from hurting.

Meanwhile, the community rallies with fundraisers and bake sales — and people like you, dear readers, who are outraged enough to dig deep and send cash.

You make this the best of all worlds.

And at this season of peace and love and joy to the world, that touches my heart more than I can say.

To donate to Madi, go to www.youcaring.com/medical-fundraiser/madi-s-miracle-meds/61506


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