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Family remains hopeful after request for life-saving drug is denied

HALIFAX — The past month and a half has been hard on the Lindsay family, as Mark Lindsay has watched his daughter’s condition steadily decline.

“Her lung function dropped to the point where she had to be ventilated, and they took her to ICU,” says Lindsay of his 23-year-old daughter, Chantelle. “They had to hook her up to an ECMO machine, which takes blood out of one main artery, runs it through a machine, takes the carbon dioxide out, puts the oxygen into the blood and back into her body to keep her going.”

Lindsay’s daughter has cystic fibrosis, which caused her lung function to begin declining in October. Her family wanted to prescribe her a breakthrough drug called Trikafta. However, the company hasn’t applied to have it approved for use in Canada yet.

Chantelle’s medical team sent requests to both the federal health department, and the maker of the drug, for special access. Health Canada approved the request, but Vertex Pharmaceuticals recently rejected the request.

When asked why Lindsay’s application for compassionate use of Trikafta was rejected by Vertex Pharmaceuticals, the company said it could say very little due to privacy considerations.

In a statement to CTV News, Vertex Pharmaceuticals says, “We endeavour to make these complex decisions about compassionate use as ethically, fairly and quickly as possible.”

Nova Scotia Liberal MP, Lenore Zann, has been trying to help – but says the latest developments are devastating.

“We’re told and led to believe that it has to do with the fact that she had a tracheotomy,” says Zann. “I wonder why they waited so long, the drug company, to give her approval in the beginning. Now they’re saying that she doesn’t fit the criteria.”

“I don’t know who to blame,” says Lindsay. “Vertex blames the government; the government blames Vertex.”

Lindsay says one thing that has helped has been the outpouring of support for his daughter. From online fundraisers selling special decals and purple keyrings, to young hockey players wrapping their sticks with purple tape to show their support.

“Going to be a long road, either way,” says Lindsay.

Lindsay says when his daughter went into hospital, she said she was ready to fight cystic fibrosis as long as she could. He says no matter what happens – he will keep that fight alive.

Meanwhile, the family has discussed with doctors whether a lung transplant is a possibility – but currently, Chantelle is not stable enough to be moved to Toronto to wait for a donor. In the meantime, the family says they’ll continue to hold out hope she will pull through.

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