Families forced to smuggle in life-saving cannabis oil for children with epilepsy amid shortages of medical wonderdrug in the UK
Desperate families are turning to drug trafficking to keep their severely epileptic children alive amid shortages of medicinal cannabis in Britain.
Parents whose children are ‘one strike away from death’ have repeatedly struggled to obtain cannabis oil, which was legalized in 2018, and are now taking matters into their own hands.
The Mail has spoken to two families who had no choice but to travel to the Netherlands and smuggle the oils back after a pharmacy in Britain that dispensed their private prescriptions did not have enough to make ends meet.
Graham Levy, 64, said he had ‘no fear of being arrested’ as he will do ‘anything’ to keep his daughter Fallon, 29, alive. “The government forced me to become an international drug smuggler,” the real estate sales consultant said.
Pictured is Joanne Griffiths, a mother who had to travel to the Netherlands this week to obtain medicinal cannabis for her severely epileptic son Ben, due to supply problems in Britain
Joanne Griffiths (left) and Graham and Elaine Levy, pictured in Amsterdam, where they purchased essential medicinal cannabis oils
The issue threatens to reignite the row over the accessibility of medicinal cannabis after ministers legalized it following the high-profile cases of Billy Caldwell, then 12, and Alfie Dingley, then six.
Their families had access to medicinal cannabis oil from abroad, which significantly reduced the number of attacks.
Sajid Javid, then the home secretary, said he was “taking swift action” to allow specialist doctors to prescribe medicinal cannabis “where there is a real need”.
But five years later, other families feel forgotten as the drug is still not widely available on the NHS, leaving desperate parents paying around £2,000 a month for private prescriptions.
Not only are they financially crippled, but recent shortages have left them panicking that they will run out of the crucial drug.
Target Pharmacy has the only Home Office license to make and distribute the oils of the Dutch company Bedrocan.
Although there is no indication that the pharmacy did anything wrong, several parents had difficulty receiving their orders of Bedrolite and Bedica, two oils from Bedrocan, this summer. They contain varying amounts of THC, the main psychoactive component of the cannabis plant.
In emails received by the Post, families were told the items were out of stock and there was no date for the arrival of the next batch.
The photo shows a close-up of the medicinal cannabis oil that is in short supply in British pharmacies
Graham and Elaine Levy, pictured with their daughter Fallon (29), who has Lennox-Gastaut syndrome (a severe form of epilepsy)
“It’s so variable,” said Mr. Levy, whose daughter lives with Lennox-Gastaut syndrome, a severe form of epilepsy. She takes Bedrolite and Bedica every day and has now had about ten attacks from 300 attacks a month.
“A few months ago we just couldn’t get it, so I called my contact in the Netherlands,” Mr Levy added.
‘I’m not afraid of being arrested because we are on the right side of the argument. We will do everything for Fallon.” Medical cannabis is highly regulated and importing it into Britain without a license or reporting it to the Home Office is illegal.
But Mr Levy and his ex-wife Elaine Gennard are desperate. Speaking to the Post in Amsterdam after collecting the medicines, they said they ‘couldn’t risk running out – it’s a life saver’.
Mr Levy added: ‘We are angry that our lives have been torn apart over the last 25 years and what we have to do now to get the medicine that will keep her alive is buy a plane ticket, come along and pay thousands of pounds before bring it back.” Mrs Gennard said: ‘We want our lives back. We want to stop this.’
They made the 400-mile round trip from Bedfordshire, paying £1,400 for a private prescription from a Dutch GP.
Mr Levy’s salary is just over £2,000 a month and all of it goes towards his daughter’s medicines. The family even sold their house a few years ago to finance the medication.
Joanne Griffiths, whose son Ben, 14, has cerebral palsy and epilepsy, traveled to the Netherlands from Liverpool after her son was hospitalized due to prescription problems.
“We are forced to criminalize ourselves to keep our children alive,” says the 48-year-old entrepreneur.
The cause of the delays remains unclear, but experts say it is already far too late to make medicinal cannabis available to all severely epileptic children in the NHS.
Hannah Deacon’s son Alfie, who helped change the law, is one of only three children to receive medical cannabis paid for by the NHS, and this is never delayed.
Now 12, he has gone from 150 chronic attacks a week to episode-free for three years.
Professor Mike Barnes, a neurologist and medicinal cannabis expert, estimates that there are as many as 10,000 epileptic children in the UK who could benefit from medicinal cannabis.
A government spokesperson said anyone having difficulty getting a prescription should contact their prescriber. Target Pharmacy did not respond to requests for comment.