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Epidyolex Update

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The National Centre for Pharmacoeconomics (NCPE) have issued their recommendation to the HSE regarding the reimbursement of Epidyolex.

Epidyolex is a cannabidiol (CBD) medication which through clinical trials has been shown to have a positive impact in the treatment of two rare epilepsies – namely Lennox Gastaut Syndrome & Dravet Syndrome.

The drug was granted European Marketing Authorisation in 2019 and last year, Epidyolex’s manufacturers GW Pharma applied to make the medication available in Ireland under the various state support schemes (medical card, long term illness, drug payments scheme etc). Currently, the drug can only be obtained privately in Ireland but at considerable personal cost which would not be manageable for the vast majority of families who may potentially benefit from it’s availability.

The NCPE have now recommended that Epidyolex is not considered for reimbursement unless the cost effectiveness can be improved.

While this decision is very disappointing, it does not mean that the medication will not be eventually reimbursed.

In fact, this developing situation is very similar to what happened in the UK last year  and this is a common recommendation from the NCPE in their assessment of various medications seeking reimbursement.

The NCPE recommendation is now forwarded to the HSE’s Corporate Pharmaceutical Unit & Drugs Advisory Group.

HSE will assess the NCPE’s recommendation along with other relevant information, such as the societal impacts of making the drug available and whether it would meet an unmet need. This will include Epilepsy Ireland’s submission supporting the reimbursement of this medication, made last September. In our submission, we focused on how families are desperate for effective new treatments and the potential positive impacts this drug could make in their day to day lives.

The HSE will also begin negotiations with the manufacturer of Epidyolex, GW Pharma with the aim of agreeing a price suitable to both parties.

We will be continuing our representations to all relevant bodies to highlight the importance of this drug being reimbursed for families in Ireland who are caring for loved ones with these severe and debilitating forms of epilepsy. You can read more about our submission to the NCPE by reading the associated article in the 'News' section of our website. 

While the path to reimbursement would certainly have been more straightforward had the NCPE issued a wholly positive recommendation,  we remain hopeful that Epidyolex will eventually be reimbursed and we will be doing our utmost to make this happen.

You can read more on the NCPE’s decision by visiting the National Centre for Pharmacoeconomics website.

As further information on this process becomes available, we will provide further updates on our website and social media channels.