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19 February 2018

Epilepsy Society reacts to family's quest to give son medical cannabis oil

This morning (Monday 19 February 2018), news broke on the BBC of a young family who desperately want to be able to give their little boy Alfie Dingley, medical cannabis oil to treat his seizures.


Picture PA

Alfie is six years old and has a rare form of epilepsy - PCHD-19 - which means he has up to 30 seizures a day. His seizures don't respond to anti-epileptic drugs.

Last year his mum, Hannah Deacon, took him to the Netherlands where he was prescribed a cannabis -based medication. His seizures reduced in number, duration and severity.

Now his parents are fighting for him to be allowed to take the same medication in the UK, although it is currently illegal. The drug is listed as a schedule 1 drug.

You can read the full story here.

Professor Ley Sander, medical director at Epilepsy Society gives his response to the story and explains why we must speed up the process for accessing new drugs to meet the demands of personalised medicines.

Professor Ley Sander says

'We feel every sympathy for Alfie Dingley and his family as they struggle to find a treatment that will control his seizures.

'Our ability to provide new, safe and effective treatments is not keeping pace with our ability to define conditions such as PCHD-19 which affects Alfie.

'This is a rare disease caused by a mutation on the PCHD-19 gene which makes a protein involved in brain activity.

'It is frustrating when treatments that are available in the UK fall far short of controlling Alfie's seizures. It is even more frustrating for his family when there appears to be a treatment available in other European countries but which is not licensed in the UK.

'However, drugs cannot be licensed on anecdotal evidence. It is imperative that all drugs go through rigorous regulatory and clinical trials to ensure safety and efficacy. These must be evaluated relative to how the treatment is used, what other treatments are available, and the severity of the disease or condition. Benefits of the drug must outweigh the risks.

'Cannabis is a schedule-1 drug and is subject to strict control restrictions. We do not know what the long-term outcomes on the brain will be for someone who is taking this drug from an early age.

This is a very emotive case because it involves cannabis, but as we continue to define  the epilepsies  specifically, rather than generally, the need for more personalised medicines will become more widespread.

'There is a real need for us to accelerate access to new and repurposed drugs so that we can treat epilepsy at a much more individual level.'

Find out more about cannabis and epilepsy

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