Winnipeg family urges province to cover the cost of new cystic fibrosis drug

A Winnipeg mother is urging the Manitoba government to cover the cost of a new revolutionary drug for cystic fibrosis that she hopes could dramatically improve her son’s life.

Alberta, Saskatchewan, Ontario and Quebec have all recently announced they will cover Trikafta — which costs about $300,000 a year — for eligible patients.

“There’s so much hope that comes with this beautiful medication and and the miracles that it is performing for so many people,” said Desniege Meyer, whose son lives with the genetic disease.

“But then there’s this profound lack of justice that because we live in Manitoba, we not only don’t have access to the drug, but we don’t know when we’ll have access to this drug.”

Her son Beckett, 13, has spent much of his life in and out of hospital. 

The disease causes a build up of thick mucus in the body, which can cause chronic respiratory infections, digestive problems and other complications.

Health Canada approved Trikafta in June for use in people age 12 and up with at least one genetic mutation that causes cystic fibrosis. 

The drug, manufactured by Vertex Pharmaceuticals, is being hailed as a game-changer.

Cystic Fibrosis Canada, a national non-profit, says research suggests Trikafta could reduce severe lung disease in 60 per cent of people, increase life expectancy and reduce deaths by 15 per cent by the end of the decade.

“It’s hard to overstate the significance of this drug,” said John Wallenburg, chief scientific officer for the organization.

Wallenburg says the drug, while not a cure, attacks the disease at its root by fixing the faulty protein which causes the build up of mucus.

“It’s astounding,” he said. “People who have been on the lung transplant list … their lungs improve significantly and they get taken off of the lung transplant list.”

Cystic Fibrosis Canada estimates 4,300 Canadians live with the disease, including 128 people in Manitoba. The non-profit is calling on all provinces to cover the cost of the drug.

Family considering moving

Manitoba has yet to make a decision. 

“This is a drug you simply cannot ignore,” Wallenburg said. “If I were living in Manitoba with a child with cystic fibrosis and I could not get Trikafta, I would absolutely leave.”

Meyer is weighing that possibility.

The mother of three says her private insurance will not cover the drug until the provinces decides whether or not to add it to the drug formulary.

“I’m listening to my kid cough in the next room and all I want to do is scoop him up and put him in the car and drive him to Ontario. I mean, it’s two hours away. It feels so unfair,” she said.

“We might need to make a move if Manitoba can’t make a decision quickly because I’m not going to sacrifice my son’s life because of a political process that’s just taking too long.”

Decision under review: province

In an email, a spokesperson for Manitoba Health and Seniors Care living says the decision is under review.

“The pan-Canadian Pharmaceutical Alliance (pCPA) has reached mutual agreement on terms (pricing and conditions of coverage) with Vertex Pharmaceuticals for the drug Trikafta,” the statement said. “Manitoba will now work through our respective processes to make the decision to list Trikafta on the Pharmacare public drug plan and expect a decision to be made in the coming weeks.”

“Manitoba realizes the COVID-19 pandemic has presented challenging times for cystic fibrosis patients and their caregivers and will be working as quickly as possible on this file.”

Back at home, Beckett straps on an airway clearance vest, which vibrates to dislodge mucus in his chest — a therapy he performs an average of two hours a day.

The 13-year-old is on a long list of medications, supplements and inhalers. At night time, he uses a feeding tube to keep up his nutrition and caloric intake. 

His mother says having this medication means she can imagine a different future for her son, one that includes taking a deep breath without coughing, climbing stairs without having to stop halfway, fewer infections and hospitalizations and losing the feeding tube at night.

“We’re talking about a daily impact that allows him to live like a normal teenager,” she said. “Then also the bigger picture it means maybe not dying, or certainly not so soon, or maybe not of cystic fibrosis.”

Beckett says it’s nice to know this medication is out there and he hopes he can try it.

“It would be incredible to finally have a normal day,” he said.

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