News

Blizzard

Wynne 'playing politics' with Madi's meds pledge: Mom

By Christina Blizzard, Special to the Sun

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)

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)

TORONTO - 

Beth Vanstone fears Kathleen Wynne and the Liberals are playing politics with a pledge to fund life-saving medications for her daughter, Madi.

She says reports that the provinces had reached a deal with the drug manufacturer, Vertex, on price were grossly overplayed and she believes patients are being given false hopes on the eve of an election.

“I have a strong feeling that they’re playing politics,” Vanstone told me Sunday.

Since the first story appeared, she’s heard from a Vertex representative who has told her the deal is far from final. “Vertex hasn’t even received a letter of intent from this province,” Vanstone said.

She questions why the deal was suddenly announced and wonders if it’s a response to a letter Tories sent to Cystic Fibrosis Canada pledging that a Tory government would fund the drug Kalydeco for Madi and other CF patients like her.

“It was funny to see this progress so quickly,” Vanstone said.

Her local Tory candidate in Simcoe Grey, Jim Wilson, as well as PC Deputy Leader Christine Elliott, both of whom have fought tirelessly for the little girl, signed the letter.

Vanstone spoke as she was heading to a fundraiser for Madi in Alliston. An autistic boy held a ball hockey tournament at the arena and donated the proceeds and all his gifts to buy Madi her meds.

“How come they can blow $317 million on the MaRS building when kids are donating their birthday gifts so Madi can get her medication?” she asked.

Wilson said he has no faith in the Liberals delivering on their promise.

“I would not believe anything the Liberal government says,” he said. “I think we should wait and see if Madi has her drugs covered.”

He, too, ties the announcement to his letter.

“Within six hours the government came out and said there was a price,” Wilson said.

Madi, 12, has cystic fibrosis, a disease that’s scarring her lungs.

A new wonder drug, Kalydeco, is saving her life.

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

Her 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. When Madi’s dad, Glen, changes his job in August, they aren’t sure if they’ll still have insurance coverage.

Meanwhile, a spokesman for Vertex issued a statement Saturday saying it was far from a done deal.

“We are encouraged by the progress of our discussions in recent days and by the comments made by provincial officials regarding this process, but we have not yet reached a final agreement,” Zachry Barber said by e-mail.

Wynne said Saturday she was “pleased” that the national deal had concluded.

“Our Ministry of Health is looking at the deal that was made. And my hope is that we will be able to cover Kalydeco very, very soon for Madi and for all of the people who need that medication,” Wynne said.

Look, this little girl’s life is on the line. We need more than vague election promises and political opportunism by the Liberals.

Is it too much to ask that we stop spending money on gas plants and MaRS and start paying attention to the important things?

We need someone to look Madi in the eye and tell her she’s important. That the people of this province demand she gets the best treatment we can give her.

Is it really too much for a civilized society to demand that the smallest, the frailest and those most at risk get the care they need?

 


Reader's comments »

By adding a comment on the site, you accept our terms and conditions