Cystic Fibrosis: Profiteering Drug Company Versus Human Hardship

 Cystic fibrosis (CF) is a genetic disorder that affects mostly the lungs. Long-term issues include difficulty breathing and coughing up mucus as a result of lung infections. The illness can lead to premature death. It is a miserable condition. 

Ten thousand people have CF in this country. Orkambi is a wonder drug that can relieve the symptoms for half those with CF. It is not a cure.  

There is a problem. It would cost £104,000 per patient per year to deliver the drug. Vertex, the company that owns Orkambi, refuses to make it available any cheaper. It has turned down NHS England’s offer of £500m over five years for the use of its medicines.

 Vertex complains it invested billions in research to come up with the drug. A research paper by Aidan Hollis, professor of economics at Calgary University in Canada, challenges that view. Hollis works out Vertex’s profits to be $21.1bn, including profits on an earlier anti-CF drug Kalydeco. Hollis claims “They are earning profits on those drugs. There is no question about it compared to what they put in”.

Jon Ashworth, the shadow health secretary, said: “Those living with cystic fibrosis. who are currently denied this life-saving drug. will be disgusted at these profits. This big pharma firm, by refusing to play fair with the NHS, is holding lives to ransom. The price they want for Orkambi is simply unjust.

Rob Long, who has been buying Orkambi privately for his nine-year-old son Aidan, says he is appalled by the high prices of the drugs from a company making such profits:

 “It’s the obscene face of capitalism, where a drug company makes up its prices based on what it thinks it can get away with,” he said. “The present system is broken and not working....With no end in sight, how can the government allow this impasse to continue? So far, over 250 have died who could have been helped.”