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House of Commons Hansard
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Cystic Fibrosis Drugs
29 October 2019
Volume 667
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3. What steps he is taking to help ensure access to Orkambi on the NHS. [900195]

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4. What progress has been made in enabling the provision of Orkambi on the NHS. [900196]

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18. What progress he has made on increasing access to drugs to treat cystic fibrosis. [900210]

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I am delighted that a deal has been agreed to provide Orkambi and other cystic fibrosis drugs on the NHS. This deal is great value for the NHS and backed by the National Institute for Health and Care Excellence, but crucially it will improve thousands of lives. My heartfelt thanks go out to many campaigners from right across the House who have pushed this agenda but especially to the Cystic Fibrosis Trust and the patients who, along with their families, have bravely campaigned against this devastating disease. I am thrilled that we can make this progress.

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It may have taken a few years, but I warmly welcome the Secretary of State’s announcement and congratulate him on it. I echo his congratulations to all the campaigners, particularly my hon. Friend the Member for Dudley North (Ian Austin), who has led much of the campaign.

Ten per cent. of cystic fibrosis sufferers are still waiting for approval for another critical combination therapy, called Elexacaftor. Can the Secretary of State reassure me that eligible patients will not have to wait so long for that to be approved?

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Of course I would have liked the deal to happen sooner, but I am glad that the company has now committed itself to engage properly in the normal processes which mean that we obtain drugs nearly as fast as any country in the world. This result—this deal—shows that the system is working to get cutting-edge drugs into the NHS at good value for the NHS pound.

I join the hon. Gentleman in paying tribute to the hon. Member for Dudley North (Ian Austin). I also pay tribute to the hon. Member for Bristol East (Kerry McCarthy), and to other Members in all parts of the House who have campaigned on this issue. It is great to have made some progress.

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I am obviously delighted by this news, and the Secretary of State will know how delighted my family were, because when the news broke I showed him the family WhatsApp with lots of exclamation marks and happy smiley-face emojis. As I have told him, my constituent Jake Ogborne, an 18-year-old boy, was in a similar situation earlier this year when he thought that he had been approved for the drug Spinraza—there is a an online video of him having a cake and a celebration—but then he found that according to the small print he was not eligible. I want his family to be as happy as my family are now, and I hope very much that the Secretary of State will be able to look into his case.

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Absolutely. I pay tribute to the hon. Lady, who raised that case with me last night and gave me advance warning that she would raise it in the House today. I shall be happy to ensure that the relevant member of the team meets her with her constituent, if appropriate, so that we can get to the bottom of this.

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I want to associate myself with the thanks to all the campaigners who worked so hard to ensure that these drugs would be available in England as well as Scotland. I never doubted that my Government would press and press, and I am delighted that the Secretary of State’s Government have followed suit. However, there are still great Brexit uncertainties. Given that people fought for so long, what reassurances can the Secretary of State give those who will obtain these life-saving drugs that they will be possible, affordable and sustainable?

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The agreement that the hon. Lady’s Government—the UK Government—reached with Vertex means that this drug will be available in Wales and Northern Ireland as well. It is true that Scotland chose to go it alone and as a result has not received such good value for money, but what really matters is that the drug is now available throughout the United Kingdom.

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Will the Secretary of State pay tribute to campaigners in my constituency such as Matthew Dixon-Dyer, who campaigned very strongly and lobbied me very effectively? Will he also illuminate the House on how, in future, we can have smoother access to drugs such as Orkambi on the NHS?

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My hon. Friend has campaigned long and hard and has talked to me an awful lot about how important it has been to obtain Orkambi and the other cystic fibrosis drugs that will save lives, and I pay tribute to his campaigning. As I have said, we now have a system that allows access to drugs for the NHS at some of the best value in the world, and that system is working. It is clearly getting the drugs that are needed into the NHS, and I think that we should all get behind it.

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Children and their families throughout the UK will be saying a huge thank you for Orkambi. Will my right hon. Friend now turn his attention to phenylketonuria, or PKU, and the drug Kuvan, so that children like my constituent Cait, who is now 11, do not need to wait any longer?

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I can assure my hon. Friend, who has campaigned long and hard on the issue of access to Kuvan, that we are working on that as well. I hope very much that we can come to a positive conclusion.

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The system did finally work, but did it not take far too long, and is it not time to introduce transparency into this opaque system, particularly when the Americans are waiting to pounce on our pharmaceutical industry?

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The NHS is off the table in trade talks and pharmaceutical pricing is off the table, and transparency over pharmaceutical pricing would not benefit this country at all because we get the best deals in the world because we can keep them confidential, so it is a slight surprise to hear a Labour Member argue for what would effectively lead to higher prices for drugs in the NHS. Instead, we will protect the NHS.