NICE makes recommendation on cannabidiol/CBD use for epilepsy

16th September 2019

The National Institute for Health and Care Excellence (NICE) has published their initial decision to not recommend the use of cannabidiol/CBD (Epidyolex) for people who have Lennox-Gastaut or Dravet syndrome. 

This is an initial decision and not yet classed as final NICE guidance, which means that although they are not initially backing it as a treatment it will now go out to consultation before a final decision is reached. The final guidance has been earmarked for release towards the end of the year.

However, in the meantime, it does mean that unless this draft recommendation does not change then doctors are unlikely to prescribe cannabidiol/CBD for epilepsy associated with these two syndromes.

What are the reasons for the recommendation? 

NICE have highlighted a number of concerns with cannabidiol/CBD as a use of treatment for these syndromes based on the findings of a committee. The committee has a number of issues with the evidence that was submitted by the drugs manufacturer, GW Pharmaceuticals. 

One such issue that has been made clear is that although the manufacturer provided high-quality clinical evidence of cannabidiol/CBD’s efficacy over short periods of time the evidence for longer periods was not as satisfactory. The committee cited a lack of evidence for long term benefits. 

Cost effectiveness was another factor, with the committee stating that they felt the evidence contained some inaccuracies that could be considered misleading. 

What about people already accessing this medication? 

The draft medication will have little to no impact on those who are currently using cannabidiol as a treatment option via the NHS. At present, it has been clearly intended that it is not intended to affect those already accessing the treament. 

However, once the final guidelines have been published, those who are using cannabidiol as a treatment for epilepsy may need to discuss ongoing prescriptions with their healthcare professional. 

What has NICE said about their decision? 

Simon Wigglesworth, Deputy Chief Executive of Epilepsy Action, commented at length about the decision to not recommend cannabidiol, commenting:

“The initial decision of the NICE technology appraisal committee not to recommend cannabidiol/ CBD (Epidyolex) as an add-on treatment for seizures associated with Lennox-Gastaut and Dravet syndromes will come as a major blow to families affected by these severe and debilitating conditions.

 “It is particularly disappointing that, despite some high-quality clinical research demonstrating its safety and effectiveness, a number of concerns with the evidence GW Pharmaceuticals put forward in their submission to NICE are preventing it from being routinely available on the NHS.

 “These epilepsy syndromes are almost always resistant to the treatments currently available on the NHS. While we recognise the need for rigorous and robust assessments of safety, effectiveness and cost, for many this draft recommendation will be bitterly disappointing.

 “It is hard not to look at this decision alongside the recent NICE draft guidelines on cannabis-based medicines. Today’s announcement, coupled with the draft recommendation from NICE not to approve the prescribing of cannabis-based medicines for severe and treatment resistant epilepsies, is leading to a two-tier system for accessing these medicines in the UK.

 “Those with the financial means to access these medicines privately will be able to do so. However, many people who can’t afford the high prices of private healthcare will likely have to continue going to drastic lengths to raise funds or ultimately be unable to access cannabis-based medicines. This situation is wholly unacceptable in a country that prides itself on universal free at the point of use healthcare.”

In addition, the drugs manufacturer, GW Pharmaceuticals commented: 

“We are encouraged that NICE recognises the significant unmet need of patients with Lennox-Gastaut syndrome and Dravet syndrome, and the benefit the cannabidiol oral solution can bring to patients battling these diseases.

“We are committed to working with NICE to address the technical questions it has raised, with the aim of ensuring patients can access the medicine on the NHS as soon as possible following regulatory approval. We remain hopeful that NICE will recommend cannabidiol oral solution at the end of its appraisal process.”

You can also read NICE’s statement about the decision in full here. 

Final thoughts…

For all who are affected by this decision, we can only hope that NICE, the NHS and GW Pharmaceuticals reach a final decision in a timely manner so as to not potentially disrupt the treatment of those using cannabidiol or those who were hoping to use it as part of their treatment plan. 

We will, of course, post an update when more information becomes apparent. 

National Epilepsy Training can help

For more information on cannibidiol/CBD and its uses as a treatment for people with epilepsy, please call us on 01706 373075 or email