HOW CAN A ROW OVER MONEY DENY THEM A LONGER LIFE?
Innocent victims of shameful stand-off in wonder drug price battle
JOIN THE FIGHT TO END THIS INJUSTICE
FURIOUS MPs yesterday joined our fight to end the NHS cystic fibrosis scandal and make a US “wonder drug” available now.
Orkambi, which can be prescribed in 11 other EU countries, can add an average of 23 years to a sufferer’s life.
The NHS has offered manufacturer Vertex an estimated £20,000-a-year per patient, but the US giant wants £105,000 per person.
Some of the 10,400 UK families affected by cystic fibrosis have now joined forces in a petition urging NHS chiefs to thrash out a deal with Vertex.
To supply Orkambi to UK patients at Vertex’s price would cost the cash-strapped NHS around £540million a year. The NHS has offered £500million over five years – about a fifth of Vertex’s demands. Some MPs now want to use legislation from 1977 to override Vertex’s patents on Orkambi and let other firms make a cheaper version.
Tory MP Bill Wiggin said: “I am calling on the Government to enact a Crown use licence suspending the patent to make this medicine available to those who so urgently need it.”
Labour MP Ian Austin said: “There is resounding public support for making Orkambi available to everyone who could benefit from it, yet people with cystic fibrosis are still waiting.
“They’ve protested, marched and written letters, but all to no avail.”
At the Commons on Monday, Labour MP Kerry McCarthy, whose 14-year-old niece has cystic fibrosis, said: “Both sides could compromise.”
Orkambi and another drug, Symkevi, have been found to slow lung function decline – the most common cause of death for people with cystic fibrosis – by up to 42 per cent and reduce chest infections by up to 61 per cent. Dr Andrew Hill, of Liverpool University, said a generic version of Orkambi could cost just £5,000 per person a year.
Dr Hill said: “The Government has to have some more teeth. It needs to do something different.”
Parliament’s Health and Social Care Committee is launching an inquiry into the issue on March 7.
Vertex said: “Vertex welcomes the committee’s interest in access to cystic fibrosis medicines. We look forward to continuing to support its inquiry into this important issue.”