Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, for what reason everolimus is not available on the NHS for people with epilepsy related to tuberous sclerosis complex; and what representations NHS England has received from the Tuberous Sclerosis Association on providing everolimus on the NHS.

The commissioning of everolimus is a matter for NHS England, via its specialised commissioning programme.

NHS England has advised that the Clinical Priorities Advisory Group (CPAG) has considered everolimus as part of the May 2018 prioritisation round. The outcome of this was that the treatment fell into the lowest of five levels of relative priority for funding, meaning it had the lowest benefit relative to other treatments being considered at the same time and the highest relative cost per patient. As a result, the CPAG has recommended that everolimus should not be routinely commissioned. Everolimus will be considered again at the next prioritisation round in November and, should it be successful, funding would be made available from April 2019.

NHS England met with the Tuberous Sclerosis Association on 25 September 2018, and explained why everolimus is not routinely funded by the National Health Service for treatment of epilepsy associated with tuberous sclerosis complex. They also discussed the outcome of the prioritisation round and the next steps.