We know that NHS England’s decision not to fund everolimus for uncontrolled epilepsy will potentially have an impact on the health and wellbeing of members of the TS community. As you know everyone’s condition is unique and people are affected in different ways and so we cannot offer advice about your particular treatment. At this stage, we suggest contacting your neurologist or GP to discuss your ongoing treatment.
If you are taking everolimus for other reasons – kidney cysts and SEGAs for example, this decision will not affect your treatment. But, as ever, if you are worried about any aspect of the management of your TSC do contact the health professional you see most regularly about your care.
Our TSA Advisers are always at the end of the phone if you want to discuss what this means for you or a family member, so please do call the adviser in your region. You can find all their contact details here: https://www.tuberous-sclerosis.org/tsa_advisers
As you will see from our news updates and posts on social media, we are launching a campaign to fight this decision. We will involve you at every step of the way. Thank you for your support and your patience.