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NHS approves two cannabis-based medicines for children suffering from epilepsy

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NHS England has approved two cannabis-based medicines used for alleviating the symptoms of epilepsy and multiple sclerosis. 

The NHS follows the new guidelines issued by the drug advisory body NICE, which looks at products for several conditions. Although charities seem to have welcomed the move by NHS, some campaigners who have been struggling for access to the drugs say that this does not go far enough.

Both cannabis-based medicines are grown and developed in the UK. Doctors will now be able to prescribe Epidyolex for children who suffer from two severe forms of epilepsy- Dravet syndrome and Lennox Gastaut syndrome- which tend to cause multiple seizures a day.

The clinical trials conducted on Epidyolex have shown that it contains cannabidiol or CBD, which could possibly reduce the number of seizures by up to 40% in some cases. The estimated number of people suffering from Dravet is 3,000, whereas it is 5,000 for people with Lennox Gastaut syndrome in England.

Despite Epiyolex being approved for use in Europe back in September, NICE initially said that the product was not worth the money. It costs between £5,000 and £10,000 per patient each year, but GW Pharmaceuticals, the manufacturer of Epidyolex has agreed to lower the price with the NHS. 

Epidyolex does not contain THC, the psychoactive component of cannabis which causes a euphoric feeling and gives a ‘high’ to the user. People who smoke weed or joint experience hallucinations because of the THC component present in the marijuana they smoke. 

While decisions on drug availability are majorly around the UK only, the NICE guidance should be applicable in Northern Ireland and Wales as well. 

The second cannabis-based drug allowed by the NHS is the Sativex, a mouth spray that consists of a mixture of CBD and THC. Sativex has been approved for helping with muscle stiffness and spasms, also known as spasticity, in multiple sclerosis. However, doctors will not be permitted to prescribe Sativex to treat pain.

It is the first cannabis-based medicine to be legalized and licensed in the UK after clinical trials. It has been available since 2014 on the NHS in Wales. The cost of Sativex is around £2,000 a year per patient. 

Cannabis-based medicines didn’t seem like an affordable option back then, but now that decision has been reversed. 

The Journey to Licensed Cannabis-Based Medicines

A consultant in the pediatric neurology at Great Ormond Street Hospital, Prof. Helen Cross, who led the UK trials of Epidyolex said that it was “great news”. She said that Dravet and Lennox Gastaut syndromes are both quite complex and difficult forms of severe epilepsy with limited effective medical treatment options. Epidyolex may serve as a great option for patients suffering from these forms of epilepsies, she said.

Additionally, the Chairwoman of Dravet Syndrome UK, Galia Wilson said many families are visiting them to ask about the efficacy of cannabis-based medicines, especially those containing cannabidiol, and the organization is thrilled to have a legal, licensed cannabis-based medicine available on the NHS.

On the other hand, there are many parents who are spending thousands of pounds to access cannabis-based medicines containing both THC and CBD imported from Canada and Europe. They have reported high reductions in the number of seizures and their severity in their children, and they’re quite furious about why NICE has still not approved any cannabis-based medicines containing both components for children suffering from epilepsy. 

End Our Pain, a campaign group, said that the new guidelines have missed out on a massive opportunity. The laws around cannabidiol have been quite restricted in the UK in the past. 

A major law had changed in November 2018 which permitted specialist doctors to prescribe cannabis-based medicines, however, this happened with only selected cases. Most doctors have been avoiding to write prescriptions for cannabis-based medicines except for Epidyolex and Sativex, because of the lack of controlled trials and regulation of these other medicines.

Charities for Multiple sclerosis also argue that the guidelines from NICE do not go far enough. 

But Genevieve Edwards, Director of External Affairs from the MS Society has said that they had been battling for access to Sativex for years and it’s wonderful for NICE to have finally listened to the voices. 

But she also agreed that the guidelines did not go far enough as no cannabis-based treatments had been licensed for treating pain which is a common symptom of MS. Edwards also added that many people might miss out as Sativex would be funded by local bodies, who may not have enough resources to prescribe it. 

A professor of neurology at UCL and the medical director at Epilepsy Society, Ley Sander said that the need for effective medical treatments for epilepsy is unquestionable. Sander further added that it is reassuring to see that the new cannabis-based medications have been through proper regulatory processes and clinical trials.

Ivan writes about Cannabis at The Cannabis Radar. He has a degree in Nutrition Sciences from University of Oklahoma Health Sciences Centre. He likes to spend his spare time reading to his daughter or spending time with his wife.

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