NHS England Agrees to Fund Everolimus for SEGA




We are delighted to announce that NHS England will now routinely fund Everolimus for inoperable TSC brain tumours (SEGA). This means that NHS England have reversed their previous decision made this summer when they had reached a decision that Everolimus was ‘unaffordable’.

Jayne Spink, Chief Executive Officer for the Tuberous Sclerosis Association (TSA) said:

“We are pleased and relieved that NHS England has finally recognised the value of Everolimus and that doctors will now be able to routinely prescribe it for people with TSC with inoperable SEGA. We are only sorry that it has taken so long. We would like to thank everyone who has worked so hard to make this treatment available."

Dr Chris Kingswood, Trustee of the TSA and NHS consultant, added:

“It is excellent news that NHS England have recognised that this extremely effective and affordable treatment should be funded for the 20 young people who would otherwise die. The hall mark of a civilised society is how it looks after its most vulnerable members.”

The #Fight4Treatment campaign has seen the TSA, TSC community, clinicians and politicians from all major UK political parties call for a U-turn on the original NHS England decision in July. We would like to thank everyone who wrote to or met with their MP, joined our protest outside Parliament on October 26, signed and shared our e-petition, shared our social media posts, or took the fight to their local media. This life-giving decision would not have been possible without the support of every single one of you.

Key political supporter, Greg Mulholland MP, said:

“We now finally have the news we wanted to hear and I greatly welcome the decision by NHS England. I want to pay tribute to all the families, their loved ones affected by Tuberous Sclerosis Complex, MPs of all parties, and also to the Tuberous Sclerosis Association, all of whom made this happen. We now hope the funds needed to ensure access to Everolimus are released immediately. Above all this is excellent news for the many young people who have been through so much difficulty, they will finally get the treatment they desperately need.”

This decision, made public by NHS England on Sunday, December 4, means that there is agreement to fund routine access to Everolimus in England, under the terms of the policy. There will be some practical things that now need to happen before clinics get up and running with prescribing. We are expecting that the practicalities will take minimal time to address. If in the meantime you find your doctor is experiences any problems in relation to accessing funding for this treatment, please contact your TSC Adviser HERE

To read the news story from NHS England click HERE

Below is a message from our CEO, Jayne Spink, to all supporters of the #Fight4Treatment campaign