Fenfluramine (Fintepla) for treating seizures associated with Dravet syndrome
On 31st May 2022, the National Institute for Health and Care Excellence (NICE) issued a Final Appraisal Document (FAD) recommending fenfluramine as an add-on to other antiepileptic medicines for treating seizures associated with Dravet syndrome in people aged 2 years and older.
NICE is the body that decides which treatments should be funded by the NHS in England and Wales. This Final Appraisal Document marks the end of a long consultation deciding whether fenfluramine (also known by its brand name, Fintepla) would be recommended for use.
Today’s announcement confirms that fenfluramine is recommended for the treatment of Dravet Syndrome, based on the following criteria:
- The patient is 2 years of age or older
- It is an add-on to 2 other antiepileptic medicines
- The frequency of convulsive seizures is checked every 6 months, and fenfluramine is stopped if it has not fallen by at least 30% compared with the 6 months before starting treatment
You can read the FAD in full here.
Next steps and timing:
There are still some steps to go before fenfluramine is ready to be prescribed by your local hospital. Availability also depends on whether you live in England, Wales, Scotland or Northern Ireland. Following the publication of the FAD, the final technology appraisal guidance for fenfluramine in England and Wales is expected to be published by NICE on 6th July 2022. Then local authorities are given 3 months in England and 2 months in Wales to make fenfluramine available for prescription.
Scotland and Northern Ireland follow a slightly different process, we hope to be able to update on these soon.
Please note, this recommendation is not intended to affect treatment with fenfluramine that was started in the NHS before this guidance was published. People having treatment outside this recommendation may continue without change to the funding arrangements in place for them before this guidance was published, until they and their NHS clinician consider it appropriate to stop.
For more information please see the links below.