Cystic fibrosis drug company hits back over cost claims

The manufacturer of a cystic fibrosis drug has cranked up the pressure on the Government and the HSE, accusing the latter of not offering any guidance on the decision-making criteria for any possible purchase of Orkambi and claiming “misinformation” was causing undue fear and confusion among patients.

Vertex, which makes Orkambi, made the comments in an open letter to Philip Watt, the chief executive of Cystic Fibrosis Ireland, and called on Health Minister Simon Harris to intervene after it emerged last weekend that the HSE might walk away from negotiations on buying the drug into the future because of a wrangle over its cost.

The company also warns that future investment in research and development for CF drugs could be compromised “to the potential detriment of future generations of CF patients and their families”.