Written Question on Spinal Muscular Atrophy: Drugs

Written Questions are submitted by MPs or Lords to receive information from a Department.


See more on: "Spinal Muscular Atrophy: Drugs"
Date Title Questioner
1 Jul 2019, 3:53 p.m. Christopher Chope (Conservative - Christchurch) Christopher Chope (Conservative - Christchurch)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, for what reason the announcement by NICE on 15 May 2019 that it would facilitate access by people with spinal muscular atrophy to a new drug for prescription on the NHS was followed several weeks later by an announcement that the drug would be available only to a specific group of those people; and if he will make a statement.

Answered by Seema Kennedy

The National Institute for Health and Care Excellence (NICE) has advised that on 15 May 2019 it confirmed that it was able to recommend nusinersen for the treatment of spinal muscular atrophy. In the announcement, NICE said the treatment would be made available under the terms of the managed access agreement between NHS England and NHS Improvement and Biogen. However, the full detail of the agreement was not given in the announcement and NICE accepts this was misleading for some of the patient population. NICE provided clarification at the earliest opportunity and has apologised to individuals affected.


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