The licence for epidiolex for epilepsy is currently only able to be given to people with dravet syndrome and Lennox gastaut syndrome. We would like to see it changed and the licence extended for people with refractory epilepsy.
Why is this important?
48% of people with epilepsy in the uk have refractory epilepsy (not controlled). This places them at increased risk of death and injury. In the uk deaths from epilepsy have increased 70%. Many people would benefit from a change of licence for epidiolex which has been shown to help in these cases but are been denied it due to current licensing guidelines. Sadly families and individuals are suffering currently due to the current situation.