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What does the draft NICE cannabis-based medicines guidance mean for people with epilepsy?

12 Aug 2019

What is the draft NICE cannabis-based medicines guidance?

The National Institute for Health and Care Excellence (NICE) has published draft guidance for cannabis-based medicines.

Consultation is taking place with stakeholders including Epilepsy Action to look at the draft guidance. The final version is expected to be published in early November 2019.

When the finalised guidance is published this will inform what, when and how cannabis-based medicines can be prescribed on the NHS.

What does the draft guidance mean for people with epilepsy?

In the draft guidelines NICE was unable recommend using cannabis-based medicines for severe and treatment-resistant epilepsies. This is because there is not enough clinical evidence to show the medicines work and are safe for people.

The draft guidance does not make a direct recommendation not to use cannabis-based medicines for severe and treatment-resistant epilepsies. as it does for some other health conditions. Because of the draft guidance, it is unlikely that specialist doctors would prescribe cannabis-based medicines for epilepsy.

Does this cover cannabidiol/ CBD (Epidiolex) for the treatment of epilepsy?

This draft guidance does not include cannabidiol/ CBD (Epidiolex) as a type of add-on treatment for seizures associated with Lennox-Gastaut syndrome and Dravet syndrome.

NICE is developing separate guidance for CBD as an add-on treatment for these epilepsy syndromes using a thorough process called a technology appraisal. This guidance is expected to be published in December 2019.

What does Epilepsy Action think of the draft guidance?

Simon Wigglesworth, deputy chief executive at Epilepsy Action, said: “Epilepsy Action is disappointed with the draft NICE recommendations for the use of cannabis-based medicines as a treatment for severe and treatment-resistant epilepsies.

“We have always been clear about the need for more good quality clinical evidence. However, there remains a compelling argument that patients who could benefit from cannabis-based medicines should be given the opportunity to access them as a last-line treatment, where some evidence of potential benefit exists.

“The draft guidance does not make a direct recommendation against the use of cannabis-based medicines for severe and treatment-resistant epilepsies. In truth, this is little consolation for those affected by severe epilepsies on a day-to-day basis, who have pinned so much hope on cannabis-based medicines in light of last year’s change in the law.

“For those affected by severe epilepsies, hope is often in short supply. We recognise how disappointing the draft recommendations will be for many. Having already waited almost a year for this guidance, the prospect of waiting many years more for trials to be completed is unacceptable.”

What are the next steps on this issue?

It is clear that more high-quality clinical research is needed. This includes large scale randomised control trials (RCTs) which are regarded as the gold standard by UK regulators such as NICE. These trials can take a number of years. A short-term solution needs to be created for people with high needs and for people who have shown promising results using cannabis-based medicines since the change in the law.

There is an urgent case to be made to enable people with severe and treatment-resistant epilepsies to access cannabis-based medicines through observational trials or other immediate access routes. These should urgently be explored.

NHS England and NHS Improvement also published a recent report into cannabis-based medicines. This report looked at barriers to accessing cannabis / CBD based treatments on the NHS. The report included positive recommendations for research. This included other research methods alongside RCTs. The report noted that research should start ‘as soon as possible’. Epilepsy Action agrees with this and would urge relevant stakeholders to act at rapidly.

Epilepsy Action will respond to the NICE guideline consultation fully. We will continue to stand beside people affected by epilepsy and ensure the voices of epilepsy community are heard by all stakeholders in this debate. It remains our position that people with epilepsy who could benefit should be able to access cannabis-based medicines in a safe and timely manner. We’ll keep pushing for this to become a reality.

Contact us

We’ll be sure to keep you updated as this issue progresses. If you have any questions or concerns about cannabis-based medicines or anything else related to epilepsy, you can call the Epilepsy Action Helpline on 0808 800 5050 or email helpline@epilepsy.org.uk.

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