Portsmouth MP joins push for cystic fibrosis drug

The new drug, Orkambi, is being manufactured by Vertex, with MPs across the House of Commons adding their names to a letter urging flexibility in their pricing offer to the NHS.

The letter, which was organised by MPs Heidi Allen and Ian Austin, said: ‘As you are acutely aware, cystic fibrosis robs sufferers of many things but perhaps most importantly time.

‘Three years after Orkambi was licensed, cystic fibrosis sufferers are still waiting for access.

‘Median life expectancy for cystic fibrosis patients is 47; if we set the negotiations in this context, access to this drug has taken too long.

‘A deal with NHS England gives Vertex access to real world evidence of cystic fibrosis, which will be of enormous benefit to your scientists working on the next generation of cystic fibrosis therapies

‘In conjunction with a fair deal for Orkambi this evidence base will allow Vertex to reach its goal of finding ways to treat the entire disease population.’

Austin has met with Vertex and the Cystic Fibrosis Trust, with the Portsmouth South MP also due to meet with Vertex next month.