Everolimus available for tuberous sclerosis complex seizures

Published: January 07 2019
Last updated: September 28 2022

NHS England has agreed to make available a treatment for hard-to-treat focal onset seizures caused by the condition tuberous sclerosis complex (TSC). This has come after the organisation initially decided not to commission the medicine – everolimus – in June 2018.

NHS England has said that from 1 April 2019, everolimus can be given to patients 2 years and older with TSC-related seizures alongside their current medicines. This is in cases where seizures have not responded to at least 2 different epilepsy medicines and where surgery is not considered appropriate. This followed recommendations made by the Clinical Priorities Advisory Group that everolimus be made available.

TSC is a genetic condition affecting fewer than 6 in 100,000 people. It can lead to growths developing in parts of the body including the brain. NHS England’s Commissioning Policy, published in December 2018, says that seizures are one of the most common neurological features, occurring in more than 4 in 5 people (84%).

TSC-related seizures are currently treated with epilepsy medicines. Other treatments, such as the ketogenic diet, vagus nerve stimulation and epilepsy surgery are also considered.

Louise Fish, CEO of the Tuberous Sclerosis Association (TSA) said: “We are thrilled that NHS England has decided to fund this potentially life-changing and life-saving treatment.” She commended the TSC community for campaigning to achieve this outcome.

Simon Wigglesworth, deputy chief executive at Epilepsy Action, said: “We are delighted to hear that NHS England has agreed to fund everolimus, after previously rejecting the proposal. There is good evidence to suggest that everolimus could have a life-changing impact on those people living with tuberous sclerosis, whose seizures do not respond to current epilepsy treatments.”