Buyers club seeks to bypass UK's Orkambi impasse

It has now been nearly three years since Orkambi (lumacaftor-ivacaftor), the treatment for cystic fibrosis (CF) patients who have the F508del mutation, was first ruled too expensive for use on the UK’s National Health Service (NHS).

Despite the protestations of parliament, parents of patients whose survival depends on accessing the drug, and a nationwide campaign, there has still been no agreement reached with the drug’s manufacturer, Vertex Pharmaceuticals (Nasdaq: VRTX).

"We hope that this news brings some light into what has been a very dark three years"Rather than watch on hopelessly as more months slip by with their loved ones unable to access a drug with a list price of more than $100,000 ($127,000) per year of treatment, a group of patients’ relatives have set up the CF Buyers Club.