NHS & medicines company agreement on cystic fibrosis drug “desperately needed”


Layla Moran has welcomed the news that NHS England and drugs company Vertex have agreed to get back around the negotiating table to discuss making new cystic fibrosis drug Orkambi available to patients.

Liberal Democrat MP Layla is one of over 60 MPs from different political parties who have twice written to Vertex encouraging them to further their dialogue with NHS England in pursuit of a pricing deal that would see access to Orkambi unlocked for thousands of cystic fibrosis sufferers. 

Cystic fibrosis (CF) is a life-shortening genetic condition that affects over 10,400 people in the UK. Last year, half of all people who died with cystic fibrosis were under the age of 31. Orkambi is the only precision medicine licensed for people with cystic fibrosis who have a specific set of CF-causing genetic mutations, known as one’s ‘genotype’. Orkambi works for people who have two copies of the F508del mutation – around 50% of people with CF in the UK.

Orkambi was approved by the European Medicines Agency in 2015 and is available in 9 European countries, but is still unavailable in the UK due to a dispute between manufacturer Vertex and the NHS over the cost – meaning cystic fibrosis patients in the UK are suffering more and dying younger.

Ms Moran got involved with the campaign after meeting with the South East Parents Cystic Fibrosis Support Group and parents of young people in Oxfordshire who would hugely benefit from the new drug being made available on the NHS.

After negotiations stalled in July, MPs intervened to get the process back on track.

Earlier this week it was announced that a meeting had been offered to Vertex by Sir Andrew Dillon, CEO of the National Institute for Health and Care Excellence, and Professor Stephen Powis, Medical Director of NHS England. 

Commenting, Layla said:

“It is absolutely vital that we get this life-changing drug to the people who need it.  Sadly, negotiations between manufacturers and the NHS have stalled, but thanks to the tireless campaigning efforts of people with cystic fibrosis and their families in Oxfordshire and across the country, MPs acting on their behalf have managed to get everyone back around the table.

“I hope that these two institutions will now work to thrash out a deal that unlocks access to Orkambi and the next generation of CF drugs for sufferers as quickly as possible. If the NHS and Vertex can’t agree, MPs of all parties and from all parts of the country stand ready to demand better.”


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