Ontario is now covering the breakthrough drug Kalydeco, sending a sigh of relief through the cystic fibrosis community after a high-profile effort to get the funding focused on 12-year-old Madi Vanstone of Beeton, Ont.

“I’m hugely relieved,” her mother, Beth Vanstone, told the Star.

The Ministry of Health made the announcement Friday afternoon, saying the medication for a specific genetic variant of the debilitating lung disease is now on the Ontario Drug Benefit plan.

“Ontario will now fund Kalydeco for Ontarians affected by cystic fibrosis who qualify for treatment,” the ministry said in a statement noting physicians can submit requests for funding through the exceptional access program.

“This is great news,” said Chris Macleod, a Toronto lawyer who gets the $300,000-a-year drug under private insurance but lobbied the government to provide coverage for Vanstone and others who need financial help.

Vanstone’s family relied on community fundraisers to help pay for the pills to keep her lungs clear. Private health insurance and assistance from Kalydeco maker Vertex Pharma of Boston left the Vanstones picking up about one-fifth the cost.

“Now we can live a normal life and it’ll be the first time ever because Madi’s been a sick kid for all of her 12 years,” said Vanstone, adding she feels like a huge burden has been lifted from their shoulders.

It’s estimated about 20 Ontarians need taxpayer funding for the medication, which Macleod credits with getting him back on his feet, out of hospital, working full-time and avoiding the cost and risk of an eventual lung transplant.

The coverage follows a tentative deal reached recently after 16 months of often stalled negotiations between Vertex and a Canadian provincial bulk drug-buying consortium for what Ontario Health Minister Deb Matthews had called a “fair price” for taxpayers.

“It’s been a long wait . . . this is welcome,” said Ken Chan, vice-president of Cystic Fibrosis Canada.

Macleod congratulated Matthews and Premier Kathleen Wynne for “moving so quickly to implement the pricing agreement and list the drug.”

But he said more “heavy lifting” is required to find a better system for funding drugs for rare diseases. “We cannot wait until the next drug hits the market.”

Matthews was not available for comment.

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