Alpha-1 Antitrypsin Deficiency

Part of the debate – in Westminster Hall at 4:17 pm on 31st October 2018.

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Photo of Nigel Adams Nigel Adams Government Whip, Parliamentary Under-Secretary (Housing, Communities and Local Government) 4:17 pm, 31st October 2018

It is absolutely a matter for NICE to make its recommendations, but I think that, if this was approved, we could have a situation in which it could be available by at least April 2020. I hope that that is some encouraging news for my hon. Friend.

I probably need to wrap up the debate, but my hon. Friend also talked about the Government considering the appropriateness of introducing a more formal process of conditional approval for rare disease treatments such as alpha-1 augmentation therapy. The Department has no plans currently to establish a new assessment process for the evaluation of rare disease treatments. NICE’s methods and processes for developing its recommendations have been developed over the past 20 years through extensive engagement with interested parties.

Finally, let me assure my hon. Friend and all other hon. Members who have taken part in the debate that the Government are dedicated to improving the lives of all patients with rare diseases such as alpha-1. The publication of the UK strategy for rare diseases in 2013 was a significant milestone in that respect, and the strategy is now being implemented across the UK. The strategy set out our strategic vision and contains 51 commitments concentrating on raising awareness, providing better diagnosis and patient care, and ensuring a strong emphasis on the importance of research in our quest better to understand and treat rare diseases. Research is at the heart of better treatment and, we hope, prevention. That is why in 2017 the NIHR BioResource for Translational Research in Common and Rare Diseases was launched, supported by £36.5 million of NIHR funding.

I thank those who have come to listen to the debate, and I thank my hon. Friend the Member for Rugby and everyone present for contributing to it and for highlighting and discussing these issues. For their constituents and for all those who suffer from alpha-1 or any rare disease, I hope that I have helped in some way to assure them that the Government and the NHS are working hard to tackle these conditions and to help improve the lives of, and treatment pathways for, all patients.

Question put and agreed to.