The TSA is delighted to announce that NHS England has backed recommendations from the Clinical Priorities Advisory Group to fund everolimus for the treatment of refractory epilepsy in people with Tuberous Sclerosis Complex (TSC) in England. Everolimus will be funded from April 2019.
NHS England’s announcement follows intense campaigning from people living with TSC, their family members and the TSA to reverse their earlier decision to not fund everolimus, despite the clear clinical evidence shown to commission the medicine.

Since early July, when it was announced that funding for everolimus by NHS England was in doubt, our #everolimusforepilepsy campaign has been tireless. The TSC community has doggedly pushed for the correct decision to be made, whether by writing to local MPs, highlighting our campaign on social media, signing our petition or talking to local media.

Today, the hard work has paid off!

Louise Fish, CEO of the TSA, commented on the decision: “We are thrilled that NHS England has decided to fund this potentially life-changing and life-saving treatment. The incredible work of the TSC community since NHS England’s negative decision in July has no doubt been instrumental in getting us to this positive outcome. This is truly the best Christmas present that many families across England could have received!”

The TSA will keep all of its members updated on any further updates following the decision and will be working closely with TSC clinics across England to help them get ready to prescribe everolimus.

If you, or someone you care for, has TSC-related epilepsy that has not responded to standard anti-epilepsy medicines and are interesting in finding out whether everolimus might be an appropriate treatment, please speak to a neurologist at your next appointment.