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Batten Disease: Brineura

Question for Department of Health

UIN 4139, tabled on 11 July 2017

To ask the Secretary of State for Health, what the estimated average annual cost is to the NHS of providing Brineura (Cerliponase Alfa) to someone with the CLN2 variant of Batten Disease.

Answered on

18 July 2017

The support and care given to this group of people includes a range of treatments and supportive measures, including: anti-epileptic medication; physiotherapy; treatment for spasticity; and treatment for dystonia (including bracing and wheelchairs). Progressive feeding problems require speech and language management and gastrostomy insertion. Pain management is required for end of life care.

Given the wide range of treatments and supportive measures, it is not possible to estimate the average annual cost of treating an individual with a Neuronal Ceroid Lipofuscinosis disease, especially since some of these costs will fall to NHS England and some to clinical commissioning groups.

It is estimated that there are between 45 and 90 people undergoing care and treatment for all Neuronal Ceroid Lipofuscinosis diseases of whom between 19 and 38 have CLN2 and fewer than 10 have CLN5.