We are delighted to say that NHS England’s draft policy recommends funding the drug for patients aged two years or older with TSC-related seizures.The exact wording of the draft policy states that:
“Everolimus may be given to patients aged two years and older with TSC-related seizures that have not adequately responded to treatment with at least two different anti-epileptic drugs given at therapeutic doses in addition to their current treatments and where surgical resection has already been considered.”
We need as many people as possible to respond to the consultation so that NHS England knows how strongly the TSC community supports making the drug available for people who need it.
This is your chance to let NHS England know what you think.
You can help by responding to the consultation, which is live on the NHS England website HERE
The consultation form is written in technical language that is hard for people who do not work for the NHS to understand, so the TSA has written a short guide to help you complete it.
• You can find NHS England’s consultation form HERE
• You can find the TSA’s short guide to help you complete the form HERE
We hope that the guide will help as many people living with TSC and their families and carers as possible to respond to NHS England and share their views.
The consultation closes on 1 April 2018. You need to complete the form and submit it by this date.
NHS England is still considering its final decision on whether to funder everolimus for TSC-related epilepsy in England. We anticipate a final decision in May 2018.
The TSA would like to thank everyone who takes the time to respond to the consultation. Your contribution will help NHS England to make a better informed decision about whether to fund everolimus for TSC-related epilepsy.