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House of Commons Hansard
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National Institute for Health and Care Excellence
07 May 2019
Volume 659
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9. What recent assessment he has made of the efficiency of decision making by the National Institute for Health and Care Excellence. [910721]

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Wherever possible, the National Institute for Health and Care Excellence aims to publish recommendations on new drugs within a few months of licensing and now publishes draft guidance on cancer drugs even before licensing. Many thousands of patients have benefited from rapid access to effective new drugs as a result.

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The Secretary of State will know that Maryam is now nine months old. We have been waiting nine long weeks for NICE to announce a decision that I am told it has already made. Spinal muscular atrophy babies have been waiting 16 months for the care they need, which is longer than many SMA babies live without treatment. There is another closed-door meeting tomorrow. If NICE finally decides to provide Spinraza on the NHS, how long will it be before Maryam and the other babies get their first dose?

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The hon. Lady rightly raises an important case, and I have met her about it and followed it closely. As she says, there is work ongoing and happening this week to try to make progress. NICE is currently developing technical appraisal guidance on the use of the drug Spinraza, to which she refers. We are working to ensure that we can get it right.

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As chairman of the all-party parliamentary group on multiple sclerosis, may I urge my right hon. Friend to ask NICE to expedite its perfectly proper processes on the licensing of cannabis-based drugs, particularly for the treatment of multiple sclerosis, Parkinson’s and motor neurone disease?

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Yes. My hon. Friend raises another important area where progress is being made on the ability for people to get access to drugs that could help them. In the case of medicinal cannabis, we now have a programme in place, as we discussed in this Chamber a couple of weeks ago, so that those with acute conditions and with clinical support for using medicinal cannabis can get it. We are also working as rapidly as we reasonably can to normalise the ability to use medicinal cannabis within the NHS.

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Kuvan, Orkambi and Spinraza—these are just three life-changing drugs to which thousands of patients are being denied access on the NHS. Patients have waited far too long for the drugs they desperately need, and for some, as we have heard, it is a matter of life and death. Does the Secretary of State agree that the NICE appraisal process for rare diseases is just not fit for purpose?

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I do agree it is important that NICE constantly tries to get those decisions made objectively, robustly and as fast as possible. There is cross-party support, and I hope continuing cross-party support, for these judgments being made independently so that they are taken not by Ministers but by clinicians. We can all agree that this has to be done as quickly and as efficiently as possible.