Breakthrough cystic fibrosis drug destroyed while thousands of NHS patients wait amid funding impasse

'It's heart-breaking that packets of lifesaving drugs have been thrown away'

People with cystic fibrosis have to regular inhaled medication to prevent infections and clear mucus from their lungs (Getty)

Nearly 8,000 packets of a breakthrough drug which could prolong the live of people living with cystic fibrosis (CF) for decades, were destroyed last year while the English NHS and its manufacturer haggled over price.

Documents released by the House of Commons Health Committee show that 7,880 packets, each offering a 28 day supply of the drug and intended for distribution around Europe, exceeded their expiry date in 2018.

This would be enough to provide the drug for around three months to every one of the 2,834 eligible patients in England.

MPs, parents and patients campaigning for an end to the impasse and said it was an “outrage” that the drug had been allowed to go to waste.

"It’s heart-breaking that packets of lifesaving drugs have been thrown away because they’re out of date – what a desperate waste," said David Ramsden, the chief executive of the Cystic Fibrosis Trust calling for talks to be reopened.

Danielle Larkin, whose daughter has CF, said simply: "I'm disgusted”.

Orkambi is “precision medicine” which helps preserve the lungs of people with cystic fibrosis who may otherwise face repeated infections, scarring and gradually reducing function which means many require a transplant in their 30s.

England has the largest population of cystic fibrosis patients anywhere in the world and around half carry the mutation that means they could benefit from Orkambi.

However the drug isn’t currently funded because the National Institute for Health and Care Excellence (Nice) has deemed that it doesn’t provide sufficient extra years of healthy life for the price tag being demanded by its manufacturer Vertex Pharmaceuticals.

In the US the drug costs roughly $272,000 (£207,000) per patient, per year.

While the NHS is able to negotiate a lower price as it is the sole purchaser for England officials have told the health committee the drug is still not cost effective at the £105,000 price tag Vertex has come down to.

This has caused huge frustration to parents and patients who are unable to afford the drug independently and are now seeing stocks go to waste.

A Vertex spokesperson said: "Stock requirements are estimated several years in advance and so, like all pharmaceutical companies, some stock becomes out of date. Vertex does everything it can to avoid having to withdraw stock from use."