'It was horrific': Reflecting on the fight for access to a 'miracle' drug
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- Опубліковано 25 сер 2024
- In an investigation published by Noteworthy, Investigate Europe reveals how people with cystic fibrosis across the continent have been priced out of access to life-saving medications.
In Ireland, a dispute with the government kept Kaftrio out of reach from 35 children in 2022 because their gene mutation was excluded from an earlier contract and Vertex pressed for additional payment. It was nearly a year before the children eventually received the drug.
“It was horrific, it was 11 months of crying every day” reflects Gràinne Uí Lúing, whose two daughters were affected by the delay.
Read the full investigation: www.noteworthy....
Investigate Europe (www.investigat...) is a non-profit journalistic cooperative with members from 11 countries. Noteworthy is the crowdfunded investigative journalism platform from The Journal, and is the Irish publication partner for this series.
For more on Noteworthy see www.noteworthy.ie
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