What is Epidiolex?
Epidiolex is a cannabinoid-based medicine used to treat seizures from certain epileptic conditions like Dravet or Lennox-Gastaut syndrome. These forms of epilepsy are particularly rare early childhood forms, with Lennox-Gastaut syndrome affecting between 1 and 5 out of every 100 children with epilepsy whilst Dravet syndrome affects 2 or 3 children per 500 children with epilepsy. Both forms are also often resistant to typical forms of treatment.
Due to this resistance to typical forms of treatment, Epidiolex has been considered by many as a possible medical alternative for these conditions.
How does Epidiolex work?
The cannabidiol in Epidiolex is thought to work by acting on the body’s TRPV1 and GPR55 protein channels, where it has an effect on the epileptic activity in the brain.
How do you use Epidiolex?
As always,cannabis-based drugs should only be taken after close consultation with a doctor, who will determine if the medication is suitable for the patient and what dose would best suit their symptoms and specific epileptic condition. The doctor will also take into account the other medications the patient is taking, the patient’s response to this treatment and their weight.
Epidiolex should betaken orally as instructed by the doctor, usually around twice daily,with care being taken to administer the drug the same way with each dose (for instance if you take the dose with food, you should always maintain this method when taking the next dose to achieve consistent results).
As is often the case with drugs containing cannabidiol, the doctor will most likely suggest that the patient takes a ‘start low and go slow’ approach to dosing, so that detrimental side effects can be avoided.
Common side effects of Epidiolex use include:
- Lack of energy
- Decreased Appetite and subsequent weight loss
However, if any of the following, more serious side effects occur, contact your doctor as soon as possible:
- Nausea or vomiting that doesn’t stop
- Abdominal pain
- Yellowing skin or eyes
- Abnormally dark urine
- Depression or suicidal thoughts
- Any symptoms of an allergic reaction (although allergic reactions to this drug are rare)
Epidiolex in the UK
As of August 2019, the UK health regulator NICE ruled against NHS use of Epidiolex for the treatment of children with rare forms of epilepsy, stating that there was not enough evidence to prove Epidiolex’s effects long term or to suggest that it would be cost-effective.
This news came as a huge blow to many patients suffering from epilepsy in the U.K who currently have to pay around £1500 a month for medical treatment that is unavailable on the NHS. This is particularly devastating considering the seemingly promising decision made in November 2018 to reclassify cannabis based medicinal products from Schedule 1 of the Misuse of Drugs Regulations to Schedule 2, thereby officially highlighting the mounting evidence that proves that these products can have multiple medical benefits for some patients.
This new ruling by NICE means that many parents of affected children, like Anthony Clarry and Tannine Montgomery (parents to 5 year old severely epileptic Indie-Rose), have to risk illegally smuggling drugs from abroad into the U.K in an attempt to effectively treat their children whilst also avoiding heavy £1500 monthly costs.
Prior to this announcement, many doctors and patients were hopeful that the 2018 reclassification of cannabis based medicinal products would mean that Epidiolex, a cannabidiol medicine that was found to reduce seizures by almost 40% in children affected by Lennox Gastaux or Dravet syndromes, would become more widely available in the U.K.
The future of Epidiolex
Although the 2019 decision by NICE ruled against NHS use of Epidiolex due to a lack of evidence around the drug’s long-term effects and lack of cost effectiveness, many still hope that the promising drug will become more widely accessible in the future.
This hope was strengthened when NICE suggested they would work with Epidiolex manufacturer GW Pharma to attempt to resolve the cost efficiency issues identified in their report. Indeed, Meindert Boysen, the Director of the Centre for Health Technology Evaluation at NICE, is reported to have stated that: ‘[NICE] are committed to working with the company to resolve the economic modelling issues identified by the committee, and to help [GW Pharma]understand what they may need to do to mitigate the cost of cannabidiol to the NHS. Patients, carers and their families deserve no less.’
Patients, parents and doctors now wait eagerly to see if NICE can resolve these issues.
Further investigation and research into medicinal cannabis and alternative medical options is thoroughly encouraged by The Academy, particularly through the use of our own online courses, evidence base and whitepapers.
The rest of our resources are available on our website. We urge anyone considering use of medical cannabis products to consult with a trained medical professional prior to beginning use.