Experts say Trikafta, a drug currently under review in Canada, could be a game changer for treating cystic fibrosis. For some, it has already changed their lives.

But with secretive negotiations over a high cost, some warn this drug may remain out of reach for many.

My latest:
Battling governments and corporations for access to drugs she has found to be life-saving is nothing new for Lilia Zaharieva. In 2017, she saw the monetary value of her health publicly debated after losing coverage.

“I felt so dehumanized having a price on my life,” she said.
In spite of the value rare disease drugs can have for some patients, small study sizes and $250k price tags mean governments sometimes don't find them "cost-effective" enough to cover.

“I feel that sometimes, patients are being held hostage,” said @AKECassels.
Although Trikafta is currently under review, some severe patients have been granted free access by the pharma company. However, even if the drug is approved, it is not automatically covered for all.
“Canada is praised for its health-care system, but it’s so incredibly flawed."
But advocates have hope that the expedited review will set a crucial precedent for the future.

“I see this kind of laying a foundation to opening a pathway for rare disease drugs to get approved much quicker than they currently are,” said one CF patient.

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More from @thatemfagan

4 May
Received my first dose of the (Pfizer) vaccine today!! I’m very excited and lucky for this moment to have arrived—and meanwhile in NY, my little brother got his second dose of Moderna today! For those curious what getting the vax is like in BC, a thread. 1/
I got my first dose at the Victoria Conference Center. About two dozen other people were ahead of me when I arrived, spaced out in this fast-moving line up. 2/
The demographics of the line up were what you might expect—mostly people who appeared to be in their 50s or 60s, with just a few people who looked to be in their 20s and 30s. Like me, I’m guessing many are immunocompromised. 3/
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