A number of constituents have written to me about accessing the Orkambi drug because they or a loved one have cystic fibrosis, a genetic disorder that affects mostly the lungs but also the pancreas, liver, kidneys, and intestine.

Cystic fibrosis can lead to difficulty breathing and sufferers often cough up mucus as a result of frequent lung infections. Some patients could be assisted in dealing with their symptoms by taking the drug, Orkambi, but the treatment is unavailable on the NHS. 

Paul Scully MP recently tabled a Westminster Hall debate to try to ensure that drug company, Vertex, and the National Institute for Clinical Excellence (NICE) come to an agreement that will see this drug rolled out to those cystic fibrosis sufferers who might benefit from it. This was extremely well attended and I made the following intervention:

Julia Lopez Conservative, Hornchurch and Upminster

The hon. Gentleman makes the important point that if people have access to this drug, they can reduce the number of times they have to go to hospital. It would be very helpful if we had an understanding of the cost of those hospital admissions and what that would be if it was offset against the cost of the drug. Does he agree with that point?

Ian Austin Labour, Dudley North

That is a really important point and one that I hope the Minister will take into account. We should be looking not just at the cost of providing Orkambi, but at the savings that that would make in other areas. I want to develop that point in a few minutes.

Since that debate, Health Ministers have also made representations to Vertex and NICE to push for a positive outcome to their negotiations and I include a copy of their letter in the pictures to this story.