The government has ruled out issuing a medical cannabis licence to a six-year-old boy whose rare form of epilepsy improved after taking the drug abroad.
Alfie Dingley has a form of childhood epilepsy (PCDH19) which triggers multiple serious seizures. Only nine boys have been diagnosed world wide and at one point he had 3,000 seizures and 48 hospital visits in a year.
Alfie’s grandmother has described the condition as “a death sentence” as the amount of steroids currently needed to treat it can eventually lead to psychosis, organ failure and death.
Last September, Alfie, from Kenilworth in Warwickshire, went to the Netherlands to take a cannabis-based medication prescribed by a paediatric neurologist, and saw his seizures reduce in number, duration and severity.
MPs on the all-party parliamentary group (APPG) on drug policy reform have now called on the Home Secretary, Amber Rudd, to issue a licence for Alfie to continue taking the medication, which he is currently not permitted to have in the UK.
CREDIT: MAGGIE DEACON
However the Home Office said Sunday would it would not issue a licence and that it considered cannabis as “not having any medicinal benefit”.
Some forms of cannabis oil treatments are allowed in the UK with a special licence from the Home office. But not if they contain the compound tetrahydrocannabinol (THC), which is the element of cannabis that creates the high.
Whilst in the Netherlands Alfie was prescribed the drugs Bedica and Bendrolite, which contain small amounts of THC.
Describing the effect the cannabis treatment had on Alfie, his grandmother, Maggie Deacon, said: “Alfie has gone from a death sentence to the prospect of a more normal life with school, friends and fun, in his own familiar home.
“We want the people who have the power to give him this gift to put themselves in the position of Alfie’s family, to think creatively and with open minds and to find a way forward.
“Above all we want compassion to find a way round inflexible rules.”
Alfie was born healthy but had his first seizure at eight months old and as his condition worsened to the point where he eventually was having up to 30 seizures a day.
His mother, Hannah Deacon, said after Alfie proved unresponsive to treatments in this country, except for large doses intravenous steroids, the family decided to try medical cannabis on the advice of a UK neurologist.
The family moved to the Netherlands after finding a doctor in the country who would prescribe them the treatment, which saw a dramatic reduction in the seizures Alfie suffered.
With the Dutch cannabis medicines, it is expected that Alfie would have around 20 seizures a year.
Ms Deacon, 38, said: “In December and January he only had one seizure per month, which is just a miracle.
She added: “I don’t want a child who is psychotic or dead. It just frightens me to death. If we keep on giving him steroids the way he is, he will be very mentally unwell or he will die and I can’t let that happen.”
Alfie stayed with his parents in a holiday camp while he received the treatment, but without medical insurance in the country they have had to return home.
Ms Deacon is currently a full time career for Alfie , while her partner, Drew, Dingley, 39, is a sole trader who does landscaping and gardening.
She said if the family cannot get the drugs through the NHS it would cost them around £20,000 a year to travel to the Netherlands for treatment.
“Why should we have to be paying for a product that helps him and makes him feel better?” said Ms Deacon. “The NHS should be paying for that. We are saving the NHS £100,000 a year by him not being in hospital.
“We don’t really want to think about [not getting the drugs in the UK] as as far as we are thinking we are going to win this as it’s so important and this is my child’s life. If not, we are going to have to live abroad or break the law.”
The Home Office can issue licences for drugs containing THC to enable clinical trials, and will amend regulations if trial drugs are approved.
For instance, the NHS can prescribe drug the Sativex, which contains both THC and CBD, to relieve the pain of muscle spasms for multiple sclerosis sufferers.
The NHS is currently conducting clinical trials of cannabis-based drugs for conditions including epilepsy, but those have yet to conclude.
Conservative MP, Crispin Blunt, co-chair of the APPG, said: “It would be heartless and cruel not to allow Alfie to access the medication he needs to make his life as seizure-free as possible and to keep him out of hospital.
“Parliament really must look at reforming our laws to allow access to cannabis for medical purposes, which has huge public support.
“Right now, however, the Home Secretary can grant a special licence for Alfie to get the drug he needs.”
CREDIT: MAGGIE DEACON
On Sunday the Home Office released a statement rejecting the calls. A spokesman said: “We recognise that people with chronic pain and debilitating illnesses are looking to alleviate their symptoms.
“However, it is important that medicines are thoroughly tested to ensure they meet rigorous standards before being placed on the market, so that doctors and patients are assured of their efficacy, quality and safety.
“Cannabis is listed as a Schedule 1 drug, as in its raw form it is not recognised in the UK as having any medicinal benefit and is therefore subject to strict control restrictions.
“This means it cannot be practically prescribed, administered, or supplied to the public in the UK, and can only be used for research under a Home Office licence.
“The Home Office would not issue a licence to enable the personal consumption of a Schedule 1 drug.”