Batten Disease: Brineura

Department of Health written question – answered on 18th July 2017.

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Photo of Alex Norris Alex Norris Labour/Co-operative, Nottingham North

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.

Photo of Alex Norris Alex Norris Labour/Co-operative, Nottingham North

To ask the Secretary of State for Health, what the average annual cost is to the NHS of care and treatment of people with (a) any Neuronal Ceroid Lipofuscinosis disease and (b) the CLN2 variant of that disease.

Photo of Alex Norris Alex Norris Labour/Co-operative, Nottingham North

To ask the Secretary of State for Health, how many people in the UK are undergoing care and treatment for (a) all Neuronal Ceroid Lipofuscinosis diseases, (b) the CLN2 and (c) the CLN5 variants of that disease.

Photo of Steve Brine Steve Brine The Parliamentary Under-Secretary of State for Health

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.

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