Award-winning health and science journalists Astrid Viciano and Michele Catanzaro reveal the impacts of changes in EU legislation concerning so-called orphan drugs used to treat rare medical conditions.
In an investigation that covers Spain, Italy, Belgium, the Netherlands, Britain and Germany, the team analyses internal documents obtained through freedom-of-information requests from meetings of the European Commission and the pharmaceutical industry.
The team shows how drugmakers seek to accelerate the EU’s pharmaceutical approval process, potentially putting patients’ lives at risk.
The journalists also tackle the question of how the COVID-19 crisis may influence drug approval processes in the future, as the pharmaceutical industry pushes for faster approval times as part of the post-pandemic world’s “new normal”.
The project shows that patient groups have launched legal action in response to high prices of orphan drugs.
The team follows the case of CDCA-Leadiant, a recently approved treatment for cerebrotendinous xanthomatosis, a rare metabolic disorder. The drug’s price has skyrocketed in Germany. Legal claims in four EU countries are ongoing against Italian drugmaker Leadiant Biosciences.
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Cover photo by Christina Victoria Craft on Unsplash