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PARLIAMENTARY WRITTEN QUESTION
(5 February 2025)

Question Asked

To ask the Secretary of State for Health and Social Care, what progress has been made on the negotiations with Biomarine on the provision of Brineura as a treatment for Batten disease.

Asked by:
Adam Dance (Liberal Democrat)

Answer

The National Institute for Health and Care Excellence (NICE) is currently developing guidance for the National Health Service on whether Brineura (cerliponase alfa) can be recommended for routine NHS funding, taking into account real-world evidence collected during a period of managed access. The NICE and NHS England are actively engaging with BioMarin, as well as other stakeholders in the development of the guidance. These discussions are complex, and given the exceptional nature of this evaluation and the impact on patients and their families, it is essential that they take the necessary time and care to reach the best possible outcome. All parties are also committed to providing updates to stakeholders, notwithstanding the necessity that discussions are undertaken in a confidential setting.


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