No update from HSE on agreement for CF drug, claims manufacturer

The manufacturer of a drug aimed at cystic fibrosis sufferers has said it has still not received an update from the HSE over whether or not funding for it will be recommended.

Vertex, which makes Orkambi, admitted it was “in the dark” after a weekend report indicated that the HSE’s drugs committee and the National Centre for Pharmacoeconomics (NCPE) were not going to recommend the drug for use due to its high price tag.

It sparked a furious reaction from Cystic Fibrosis Ireland and from Health Minister Simon Harris, who said negotiations over Orkambi had not yet concluded, and he moved to assure users of the drug on either clinical trials or compassionate access programmes that they would still be supplied with Orkambi until a deal was reached.