Epilepsy Ireland have made a submission to the National Centre for Pharmacoeconomics (NCPE) supporting the reimbursement of CBD based medication, Epidyolex, in Ireland.
The drug has been indicated for use in two rare epilepsies - Lennox Gastaut Syndrome (LGS) & Dravet Syndrome (DS)- as an add-on treatment with Clobazam for patients aged over two years old. At the moment in Ireland, the drug can be purchased privately however, the costs associated with this are astronomical and not possible for the vast majority of families living with LGS & DS. If approved for reimbursement, the drug would then be covered by the Long Term Illness, Medical Card & Drug repayment schemes - making it a much more accessible route of treatment.
We support the reimbursement fully given the clinical evidence which has been garnered over the last number of years supporting the use of Epidyolex as indicated. As part of our submission, we reached out to families who are living with a diagnosis of LGS or DS and throughout the testimony they have provided for our submission, the devastating nature of these conditions were highlighted and how they can impact on every aspect of day to day life for someone caring for a person with LGS or Dravet Syndrome. Our submission focussed on five key themes throughout which are outlined below:
1) DS & LGS are devastating life-long conditions associated with high morbidity and mortality
2) Current treatments are failing people with LGS & DS and Epidyolex offers new hope
3) Families crave a quality of life which they currently do not have
4) Families are currently accessing (mainly unlicensed) CBD products at great personal expense
5) Epidyolex is proven to work in LGS & DS
The NCPE will now access our submission - alongside the data which has been provided by the license holder (GW Pharma) - before issuing their appraisal on the potential reimbursement of the drug to the HSE.
We have strongly urged the NCPE to recommend reimbursement in order to allow families access to a new treatment pathway which could make a lasting impact on the life of the person they are caring for and their entire family unit. We received first hand testimony from families as to why the drug should be reimbursed and the consensus amongst families is captured in the quote below:
"A mother would stand on her head for the rest of her life if it meant she had a chance of seizure freedom for her child. Each and every parent needs and wants a chance to regain some form of normality in their life as living with epilepsy [LGS] is like living in a daily nightmare that is extremely unpredictable, challenging both physically and emotionally, heart wrenching, tear and hair jerking, constant second guessing and on tender hooks to a very viscous disease that has no mercy so yes I strongly think the reimbursement of this medication by the state is a necessity and not just a recommendation."
This submission was Epilepsy Ireland's first ever to the NCPE regarding the reimbursement of a drug after we were approved as a registered patient organisation who could provide evidence last year. We hope it will be first of many submissions that we make as emerging epilepsy medications with proven data behind them seek to be reimbursed in Ireland.
We will update our website and social media channels as further information becomes available regarding the reimbursement of Epidyolex. In the meantime, we would like to thank all the families who provided input into our submission by outlining their experiences of living with both LGS & DS and we hope that thanks to this input, we will be reporting that Epidyolex will be reimbursed by the HSE.