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cf patients dying because canada won't pay for drug
pricey treatment works in treating people with the most common of the 1,700 genetic mutations and could change the course of the deadly progressive disease.
feb 27 2020
3 minute read
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a 23 year-old young woman whose family fought with the canadian government to gain access to a new therapy drug to help with her cystic fibrosis has died .
when chantelle lindsay was hospitalized last december, her father mark lindsay had petitioned lawmakers and the drug manufacturer vertex to get trikafta, a drug approved to treat cystic fibrosis in the us but not available in canada.
when they finally heard back, her father told the canadian press that chantelle’s lung function had deteriorated to the point that she needed a ventilator. still, the request was rejected.
her father said it’s his mission to ensure that no other lives are lost in the canadian government’s “chess game” with the pharmaceutical industry.
“it’s just a back-and-forth game between them to see who’s going to give first,” mark lindsay said. “[chantelle] happened to be one of the pawns to leave the game.”
health canada told the canadian press that the drug manufacturer vertex hasn’t submitted trikafta for approval to use in canada, and they can’t force the company to do so.
a spokesperson for vertex also told the canadian press that they can’t comment on products that haven’t received market authorization in canada. however, the company said they raised concerns that canada’s drug price reforms could limit access to treatments for rare diseases.
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last summer, health canada announced amendments to patented medicine regulations, which allows the patented medicine prices review board (pmprb) to determine whether a drug’s price reflects the value it has for patients. health canada told the canadian press that the amendments will make prescription drugs more affordable and accessible, saving canadians an estimated 13 billion in the next decade.
however some people, like dr. john wallenburg, chief scientific officer at cystic fibrosis canada says that the prospect of policy adjustments does little to quell the climate of “uncertainty” that has big pharma spooked and patients fearing for their lives. he told the canadian press that trikafta could be a “miracle drug” for several of the estimated 4,300 canadians living with cystic fibrosis, as it manages symptoms and addresses the underlying cause of the disease.
he added that the three-drug therapy has been proven effective treating people with the most common of the 1,700 genetic mutations that have been linked to cystic fibrosis, representing 90 per cent of patients. trikafta targets a faulty protein that causes a buildup of mucus which clogs the lungs and gums up the digestive system. wallenburg said that patients who’ve taken the drug have seen massive clinical improvements, which could change the course of the progressive disease over time.
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but it doesn’t come cheap. at approximately $300,000 per year us, it’s a price that wallenburg said canadian authorities seem unwilling to pay. he is worried that canadians will be left out of the next wave of innovation as the pharmaceutical industry moves towards targeting treatments based on a narrow, genetic understanding of diseases.
it’s a fight that mark lindsay is willing to take on, and he’s helping to appeal to lawmakers so that other parents avoid the loss that his family has suffered.
“there are people dying every day,” he told the canadian press . “chantelle’s just one that got some attention, but how many others are still out there struggling, wondering, ‘is it tomorrow? is it the next day?'”
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