Paulsgrove mum says ‘people are trying to profit from my daughter’s terminal illness’ over cystic fibrosis Orkambi drug cost row

Gemma Weir from Paulsgrove has been part of the campaign for the last three years to get the drug Orkambi made available on the NHS to help children with cystic fibrosis – including her four-year-old daughter Ivy. 

But negotiations with US drugmaker Vertex have failed to secure an affordable price for Orkambi, which costs £104,000 per year per patient.

Gemma said: ‘Having to live every day with a child who has a terminal illness is hard enough but to know there is a drug out there that could help my daughter live longer is absolutely soul-destroying.’

The issue is scheduled to be raised in the Commons today after Tory MP Bill Wiggin secured an adjournment debate.

He has called on the government to use special powers to suspend the patent for Orkambi and campaigners at Just Treatment said a generic version of the drug could cost less than £5,000 a year – meaning it would cost the NHS £4bn less over the next decade.

Gemma said: ‘Knowing that this drug could cost only £5,000 instead of the £104,000 Vertex are trying to make us pay means these people are trying to profit off my daughter’s terminal illness.

‘If Ivy started taking it now she would have an extra 23 years on her life expectancy and the fact that a company would rather take profit than help people is really disgusting.’