Madi Vanstone from Beaton, Ont., relies on Kalydeco to treat a rare form of cystic fibrosis, but is running out of money raised by friends and family to pay the $349,000-a-year cost of the drug.
Premier Kathleen Wynne promised Madi last month that she would expedite an effort by the provinces to deal with the American manufacturer of Kalydeco to try and lower the price.
However, Madi returned to the Ontario legislature today to say nothing is being done.
She says the government is not moving forward and she doesn't have the time to wait for them to take action.
Madi's mother, Beth Vanstone, says it took Wynne nearly a month just to send a letter on the issue, and she's worried patients like her daughter could die before the provinces take any real action on Kalydeco.
"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 at the end of this," said Vanstone. "They're telling us they're going to expedite things, but they're not."
Insurance coverage from the company where Madi's father works provides 50 per cent of the cost of Kalydeco, but is under review and could end in June. The manufacturer funds another 30 per cent of the cost, but only if there is insurance coverage.
"We would lose all funding at that point, which means we would have maybe enough in the account we raised so far for a month of drugs, and then we'd be watching her health go back to where it was," said Vanstone. "It's heartbreaking."