I have been contacted by a number of constituents about Orkambi and the terrible plight of cystic fibrosis sufferers.

I was present for part of the debate on this issue in Westminster on 19th March where there was was a huge turnout of MPs from all over the country. This showed just how great is the concern we all feel to do everything we can to help those living with this disease.

There were many excellent and very moving speeches made by those present and you can read them all here.

The minister who responded to the debate said that six years ago NHS England agreed to fund Ivacaftor and Kalydeco for cystic fibrosis patients with the relevant genetic mutation. He added that an additional possibility that may help treatment in the near future is the double combination therapy branded Symdeko, which has shown positive results and is currently undergoing European Medicines Agency licensing.

He then went on to say this:

"More broadly, the number of medicines for cystic fibrosis patients expected within the next three years is promising, with products being developed by a range of manufacturers as well as Vertex. NICE is aware of 31 other technologies by 19 different companies—not Vertex—that are in the pipeline for cystic fibrosis. Clearly, the prices for any new treatment will also be considered by NICE and we must ensure that the arrangements NHS England enters into now do not restrict options for patients to have the best available medicine in the future.....

The NHS is in discussions with Vertex about Orkambi. Vertex has approached NHS England with a proposed deal to reduce its prices. While I cannot share the details of this proposal due to their commercially confidential nature—believe you me, I wish I could—I can assure hon. Members that, at the level that Vertex has proposed, the products are still far from cost-effective. Therefore, there is more talking to do.

Last week NHS England made a counter-proposal, which would ensure that the drugs could be used at a price that is cost-effective. I understand that NHS England has agreed to meet with Vertex—I would jolly well hope so, and of course it is not over email—to discuss that counter-proposal further. I have seen the statements made this weekend—I must say I am no fan of Twitter diplomacy in this or any other form of diplomacy. The statements this weekend were not exactly encouraging, but they must not be the end of the story."

So it seems to me that cost remains the problem, and we need to see movement from both NICE and Vertex to enable Orkambi to be made available on the NHS as it is in a number of other European countries. Those suffering from the disease now cannot wait.

We need to keep up the pressure and I will do so.

Hilary Benn
MP for Leeds Central

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