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Tuberous Sclerosis: Children

Department of Health written question – answered on 15th March 2016.

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Photo of Greg Mulholland Greg Mulholland Liberal Democrat Parliamentary Campaigns Chair

To ask the Secretary of State for Health, what support his Department gives to children with tuberous sclerosis complex.

Photo of Greg Mulholland Greg Mulholland Liberal Democrat Parliamentary Campaigns Chair

To ask the Secretary of State for Health, if he will take steps to ensure that access to Everolimus for children with tuberous sclerosis complex-related kidney tumours is included in the NHS England draft commissioning policy on that drug.

Photo of George Freeman George Freeman The Parliamentary Under-Secretary of State for Business, Innovation and Skills, The Parliamentary Under-Secretary of State for Health

The commissioning of most health services for children is the responsibility of local clinical commissioning groups. NHS England has the role of commissioning the specialised services which patients with tuberous sclerosis access. In addition clinical policies are developed for new treatments that potentially change the impact of the disease.

NHS England has approved, as an in year service development, the routine commissioning of Everolimus for angiomyolipomas associated with tuberous sclerosis. The policy statement will be published in the next few days which will define the clinical criteria for which access is supported.

A full clinical policy for the use of Everolimus for subependymal giant cell astrocytoma is currently out for public consultation. This policy proposition will be considered for investment in the annual prioritisation round in June 2016.

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