KIDS with two rare life-threatening forms of epilepsy are set to get a breakthrough cannabis medicine on the NHS after drug regulators gave the treatment the green light.
The European Medicines Agency backed Epidyolex, made by a British company, for use to treat Lennox Gastaut syndrome and Dravet syndrome.
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Trials of the drug were carried out at London’s Great Ormond Street Hospital on children who were having multiple seizures a day.
Results showed the drug stopped the seizures in many cases and significantly reduced them in others.
CAN’T GET HOOKED
The decision by the European Medicines Agency has to be confirmed in two months, but that is expected to be a formality paving the way for the liquid medicine to be available on the NHS later this year for dozens of children affected by the two conditions.
GW Pharmaceuticals cannabis medicine contains cannabis that has the addictive part of the drug removed during production.
But it won’t help parents of children with all types of seizures.
However it could help Emma Appleby, from Aylesham near Dover.
She wept at Southend airport in Essex, in April after a £4,600 three-month supply of medical cannabis oils for her daughter was confiscated.
Teagan, nine, suffers up to 300 seizures a day due to rare chromosomal disorder called Isodicentric 15, as well as Lennox-Gastaut syndrome, which causes up to 300 seizures a day. She suffered a seizure while on the plane.
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The family flew out and got the medicine prescribed by a paediatric neurologist at the Erasmus Hospital in Rotterdam, collected it from a pharmacy and paid using their own and fundraised money.
Three double blind randomised controlled trials have proven CBD, an element found in cannabis plants, can reduce the number of seizures for those with Dravet and Lennox Gastaut syndromes.
Ms Appleby was comforted in Southend Airport’s terminal building by fellow campaigner Hannah Deacon, who last year became the first to be allowed to bring THC oil through a UK airport legally for her seven-year-old son Alfie Dingley, who has epilepsy.
MEDICS DRAG BEHIND
The law in the UK was changed last November to make access to medical cannabis legal but parents have been struggling to secure prescriptions, in part due to reluctance within the medical community.
NHS England guidance says it expects that cannabis-based products for medicinal use should ‘only be prescribed for indications where there is clear published evidence of benefit’ and in ‘patients where there is a clinical need which cannot be met by a licensed medicine and where established treatment options have been exhausted’.
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For Emma and some other parents the European Medicines Agency decision will bring relief but there are still children having seizures for which drug has not been licensed.
A spokesman for GW Pharmaceuticals said: “This marks a major milestone for patients, and their families, battling to control two of the most severe and life-threatening forms of childhood onset epilepsy.
“Cannabidiol oral solution is the first in a new class of epilepsy medicines and the first plant-derived cannabis-based medicine to be submitted for European regulatory review, representing a historic breakthrough.”
