Decision-makers in Scotland have today (Monday 7 February 2022) approved Epidyolex (generic name ‘cannabidiol’) to treat epilepsy-related Tuberous Sclerosis Complex (TSC). The news means that the TSC community in Scotland will be able to access this important new medicine from May 2022 (within 90 days of the decision).

The SMC has recommended Epidyolex to treat people living with TSC aged two years and over, with seizures (fits) caused by TSC. It is used together with one or more anti-epileptic medicines.

The TSA is delighted with the Scottish Medicines Consortium (SMC)’s decision. Epidyolex offers an important treatment option in the treatment and management of TSC-related epilepsy which can be hard to treat with common epilepsy medicines.

Access to cannabidiol across all UK nations has been a major focus of the TSA’s recent campaigning work. Last month, Welsh decision-makers also approved the medicine for use in Wales.

Louise Fish (TSA Chief Executive) commented: “We’re delighted that the SMC has recommended Epidyolex for TSC-refractory epilepsy. TSC-related epilepsy is often hard to treat and it has a huge impact on day-to-day living for people with TSC and their families. Access to Epidyolex in Scotland could have major benefits for those living with TSC in the nation. Thank you to everyone in the TSC community who shared their experience of taking this drug with us to help the SMC reach a well-informed decision and make a positive recommendation.

“Although Epidyolex is now recommended by the NHS in Scotland and Wales, our work isn’t over until everyone across the UK has access to this important treatment option.”

Epidyolex has now been approved for NHS use by decision makers in both Scotland and Wales.

The National Institute for Health and Care Excellence (NICE) has just started appraising this medicine for use in England, and the earliest that NICE will make a decision is November 2022.  This means that the medicine will not be available in England until March 2023 at best. Typically, decision-makers in Northern Ireland follow choices made by decision-makers in NICE.

The TSA will continue to keep the TSC community updated on next steps for cannabidiol and other important medicines in the TSC pipeline across the UK.

Anyone who lives in Scotland and would like to discuss cannabidiol as a possible treatment option for TSC-related epilepsy should speak to their GP, neurologist, paediatric neurologist or the Glasgow TSC Clinic. NHS Boards are asked to make this drug available within 90 days of the decision, which means that it should be available from May 2022.

The SMC’s release on the announcement can be found here.

The TSA does everything that we can to make sure that decision-makers come to the right decision in TSC treatment and therapy access. But, we can continue to campaign and fight for the TSC community only if we receive donations. Please consider making a donation by clicking here.