Little Madi Vanstone expressed frustration Tuesday over the government’s failure to provide her with life-saving medication.
The 12-year-old Beeton girl, who suffers from cystic fibrosis, and her mother Beth, went to Queen’s Park to call on the provincial government would listen to their plea for the drug, Kalydeco.
“I’ve already said everything I can,” said Madi, adding any previous progress to obtain government funding for the drug seems to have stalled. “I just have to keep counting on them to make the decision now.”
Madi said she has no time to wait for Kalydeco, a life-saving drug that helps her battle the illness.
But Health Minister Deb Matthews said that the government has continued talks with the drug’s manufacturer, Vertex, through a Canadian committee of health ministers. The Ontario government will fund the costly drug, but only at a fair price, she insisted.
“I would love this to have happened by now,” Matthews said. “I’m encouraged that we’re actually going to sit down at the table and have that conversation.”
But Tory House Leader Jim Wilson countered that despite Matthews’ comments, there have been no talks between the government and drug company.
“It’s disappointing again today that the government is sticking to their story,” he said. “While they have billions of dollars for scandals, gas plants, eHealth and Ornge, they don’t have any money, or they refuse to pay for the drug Kalydeco for a little girl.”
Kalydeco costs the Vanstone family $68,000 a year.
They received more bad news recently when the insurance coverage for Madi’s father was re-assessed. Right now, the company pays for half the drugs cost, but as of June, the family may have no coverage, said Beth Vanstone.
“They’re just not moving forward,” she said of the government. “They tell us they’re going to expedite things. They’re not. We don’t have time to wait. People don’t have time to wait.”
Despite it all, Madi said she’s doing well on the drug and ran six kilometres the other day. Her energy levels are up, she said.
“I’m great,” Madi said. “I’m awesome. I can do so much more than I could do before. I’m so happy.”