A 12-year-old girl with cystic fibrosis came to the Ontario legislature Tuesday to chide the government for not working fast enough to arrange coverage of a breakthrough drug that costs more than $300,000 a year.

“I am very frustrated,” Madi Vanstone of Beeton, north of Toronto, told reporters.

“I’m counting on them to make the decision now . . . they’re not moving forward and we can’t wait.”

Vanstone’s mother, Beth, was critical of the slow progress from provincial health ministers in arranging a meeting with Vertex Pharma, U.S.-based maker of the drug Kalydeco, in hopes of getting what Ontario Health Minister Deb Matthews calls a “fair price.”

About 120 Canadians who need the expensive drug do not have private insurance coverage, including about 20 in Ontario.

The Vanstone family is at risk of losing 50 per cent coverage of the drug, which reverses debilitating lung damage in patients with a specific genetic variant of cystic fibrosis, by June in a review by a private insurance company.

“I used to be tired and I’m not anymore. I used to get headaches and stomach aches caused by the mucus . . . I love to go running. I’m feeling so much better,” said Madi, who could face a lung transplant without the drug.

Three weeks after Alberta Health Minister Fred Horne, on behalf of a provincial consortium in charge of buying drugs in bulk, promised to “escalate” negotiations to a political level, a request was sent to Vertex last week.

“If it takes them three weeks to get a letter out I don’t know how many people are going to be left waiting for this drug . . . they’re telling us they’re going to expedite things. They’re not,” Mrs. Vanstone said after Progressive Conservative MPP Jim Wilson raised the issue with Premier Kathleen Wynne in the legislature.

Vertex spokesman Zachry Barber confirmed a letter was received last Thursday from Horne.

“We are now working with the minister’s office to schedule this meeting as quickly as possible,” Barber said in an email.

“We stand ready to meet anytime, anywhere to try and bring this process to a positive conclusion for eligible children and adults with cystic fibrosis in Canada.”

Matthews said Vertex has rejected three offers from the provincial drug alliance in negotiations for Kalydeco.

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“We want to fund the drug but they need to work with us,” she said, noting bulk discounts from drug companies have helped the provinces add 30 drugs to the medicare coverage list with $50 million in savings.

“I’m encouraged we’re going to sit down at the table” in an “unprecedented step” where ministers lead the talks instead of bureaucrats, Matthews added.

Meanwhile, the civil servant in charge of Ontario’s public drug programs and a key player in setting up the provincial drug-buying consortium has been reassigned as executive lead of the premier’s advisory council on government assets, which will look at ways to wring more value out of them.