Skip to main content


Volume 657: debated on Tuesday 26 March 2019

6. What recent progress has been made in the discussions between NHS England and Vertex Pharmaceuticals on making Orkambi available on the NHS. (910027)

On 11 March, I held a meeting with all the parties to discuss how best to ensure that people with cystic fibrosis and their families can benefit from the best drugs as soon as possible. Vertex, the National Institute for Health and Care Excellence and NHS England met on Thursday and have agreed to take those discussions forward.

Does the Secretary of State support immediate interim access to Orkambi while the negotiations are going on, and has he asked NHS England, NICE and Vertex to consider this option?

We are having constructive discussions—I am delighted that finally Vertex has agreed to participate in them; the parties have committed to providing the data needed for an objective assessment of the drugs in question, and I look forward to the discussions proceeding effectively.

A constituent of mine came to see me in my surgery. He had been born with cystic fibrosis and told me what a transformative effect the drug had had on him. He was lucky enough to be accepted on the trial, but he says we need to raise awareness because millions of people are not getting the drug. What response can the Secretary of State give to him and fellow sufferers?

My hon. Friend’s constituent is absolutely right about raising awareness of the issue and the need for these drugs. I know the impact that cystic fibrosis can have on people and of the hope that these drugs will save lives. We have made a significant offer to the pharmaceutical company, Vertex, to allow these drugs to be provided in the UK, and I very much hope we can come to an agreement.

On NICE decision making, my young constituents Nicole and Jessica Rich have the life-limiting rare condition Batten disease. Last month, NICE turned down a proven treatment for the condition after a year of deliberation. I and several cross-party colleagues wrote to the Secretary of State to ask if we could discuss this urgent matter, but we received a reply from the Under-Secretary of State for Health and Social Care (Baroness Blackwood), saying that she could not meet us because of diary commitments. This is insulting. Will the Secretary of State meet us to discuss this urgent issue?

Yes, of course I will. I understand exactly where that process has got to. It concerns a different drug from the one in the question, but it is also a very important consideration for a number of people.

Will the Secretary of State agree to or consider temporary interim access to Orkambi while the negotiations continue, and has he had any discussion so far on that subject?

I am happy to consider all options that can secure access in a way that provides value for money based on an objective assessment of what is clinically right. That is the basis of our discussions.

I am glad that the Secretary of State is taking a personal interest in this matter. In Thursday’s debate, I mentioned the case of Oli Rayner, who gave evidence to the Health Select Committee. He fell ill in his 30s and was given Orkambi just to make him well enough to undergo a lung transplant operation. Is it not ludicrous to wait until people are virtually at death’s door before being prepared to give them the drug?

That is one very important consideration. Having met people suffering from cystic fibrosis and heard directly the stories they tell about the impact on their lives and how it potentially shortens their lives, I think it is very important that we find a solution, which is why I was so determined to bring the parties together.