Government to review medical cannabis after Javid ruling
Charlotte Caldwell’s fight to get her son’s cannabis oil medicine returned has implications for all of us, says Margarette Driscoll
THE Government is considering reviewing laws on the use of medicinal cannabis after the Home Secretary intervened to help treat a chronically ill boy suffering life-threatening fits, The Sunday Telegraph can disclose.
Yesterday Sajid Javid took the unusual step of licensing a batch of cannabis oil, which is illegal in the UK, to treat Billy Caldwell, 12, who suffers from violent epileptic episodes. Billy’s mother, Charlotte Caldwell, 50, had a batch of the medicine seized by the Home Office last week.
In a decision Ms Caldwell hailed as “historic”, the consignment of the drug which she had brought from Canada but was then confiscated at Heathrow, was returned for doctors to administer to her son. The oil, which contains THC, the chemical responsible for the “high” from the drug, was rushed to Chelsea and Westminster Hospital in London where Billy was being treated yesterday.
A Whitehall source said: “Cases such as this obviously raise questions about the UK licensing regime, particularly when other advanced economies like Canada are able to license certain products. There is a concern that we’re behind the curve on this, which is why it would make sense to consider a review.”
In a statement, Mr Javid said he had used an “exceptional power” in a “complex situation” to issue a licence for the medicine to be used.
Earlier, Ms Caldwell had said she would hold the Home Office responsible if her son died. Ms Caldwell, from Castlederg, Co Tyrone, claimed Billy had not suffered a fit for more than 250 days after taking the oil for 19 months.
Although Ms Caldwell’s GP in Northern Ireland had been prescribing it, she had been told by the authorities that she risked being reprimanded.
In a ward at London’s Chelsea and Westminster Hospital Billy Caldwell’s life hangs in the balance. Billy is 12 years old, autistic and severely epileptic. His illness has become a life-and-death stand-off between Charlotte Caldwell, his mother, and the Home Office: last Monday, she flew into Heathrow from Canada with a supply of cannabis oil in her bag which was confiscated at customs. Caldwell insists it is the only treatment that has brought her son’s frightening condition under control and without it he will surely die.
“It is beyond cruelty. We have reached the point where Billy is too ill to travel to get his medication but his medication is stored minutes from where we’re now living in London,” she said. The Home Office argued that medicine was illegal, but, in a dramatic U-turn, announced it would release the oil and, by Saturday afternoon, it was on its way back to Billy.
Anyone who has witnessed Charlotte Caldwell’s distress since the cannabisbased medicine she was carrying for her epileptic son was confiscated could not fail to be moved. Billy has suffered seizures – at his worst, up to 100 a day – ever since he was a baby. Caldwell has moved heaven and earth to do everything she can to improve his prospects, almost bankrupting herself. She has travelled to the US and Canada to consult experts in childhood epilepsy and barely slept for years, ever alert for a change in breathing that might indicate the onset of a seizure. Billy, she says simply is “my life”.
Parents of children suffering from epilepsy – notably six-year-old Alfie Dingley, whose parents have applied for a licence to use cannabis oil to treat him – have been chipping away at government intransigence over drugs policy for months. Could it be Caldwell’s great, big emotional sledgehammer – a direct challenge to the law – now creates the breakthrough?
“It has to be time for change,” she says. “To regard medicine for a child, recommended by a doctor, as an illegal drug is absurd. It may be made from cannabis but the THC [psychoactive] level is so low you could drink all seven bottles I had with me and not get high. I’m pleading with the government. We can find a way round this… not just for Billy but for all the other kids who need this.”
Announcing her intention to bring cannabis oil into Britain from Canada (where medicinal cannabis is legal) was always a gamble. But when Caldwell previously declared similar medicine in Dublin, on her way to her home in Northern Ireland, she was quietly waved through. She assumed the same would happen in London and was “totally shocked” when her son’s medication, given as drops under the tongue three times a day, was seized: “I never thought for one moment they would take it away,” she says.
“I had a folder of information from a doctor, I had clinical data… what I’m carrying is my son’s vital medicine.”
Personally, it may have been a Pyrrhic victory, but in terms of PR Caldwell, 50, scored a success; her emotive fight attracted national attention. The publicity clearly spooked Downing Street and an invitation to meet Home Office minister Nick Hurd arrived. She soon found herself on the way to Westminster, but that only served to make matters worse.
“He started to quote me what I can only describe as outdated laws from 1971 [the Misuse of Drugs Act],” she says. “I explained that I have been dealing with Billy’s intractable epilepsy for 12 years and not once has any doctor abruptly stopped any medication. You just can’t do that. There must be a weaning process because it’s so dangerous to remove an anti-epilepsy medication abruptly from a child.
“I told him maybe they could get Billy’s medicine from the airport and keep it at the Home Office and I could bring Billy in three times a day to give him his dose. Again, the answer was no. Nick Hurd isn’t medically qualified, yet as a Home Office minister he was making decisions about a boy’s life.”
The hapless Hurd – officially minister for the fire service – only found himself being handed this hot potato because the minister for drug policy, Victoria Atkins, is married to a man whose company works in partnership with GW Pharmaceuticals, a UK biotech firm developing a synthetic drug from cannabis.
The pressure on the Home Office to review the law will grow this week with the arrival of Dr Frank D’Ambrosio, one of America’s leading medical cannabis practitioners. D’Ambrosio, author of Cannabis is Medicine: the A-Z of Medical Marijuana,
will be giving a Westminster briefing.
“If the Government followed the lead of many of the states in America in legalising medical cannabis, patients would benefit,” he says.
Dan Poulter, Conservative MP for Central Suffolk and North Ipswich and a qualified doctor, spoke in support of Caldwell’s campaign last week: “There is strong medical evidence that cannabis can benefit children like Billy, can benefit people who are having chemotherapy and people suffering peripheral neuropathy from HIV or Aids can benefit too. It’s time we had a good look at the law and changed it.”
The public seems to agree: polls have shown a majority support the legalisation of cannabis for medical use, and a petition to allow Alfie Dingley to be treated at home has attracted nearly 55,000 signatures.
Alfie also suffers epileptic fits and was being given cannabis oil in the Netherlands until his parents ran out of money and had to come back to the UK. Hannah Deacon, his mother, says the effect of the oil on his seizures was “nothing short of a miracle”, reducing the number from more than 100 per month to fewer than 10.
Last month, the Dingleys applied for a licence to use the cannabis oil at home in Warwickshire. Asked about the case at Prime Minister’s Questions, Theresa May, who has met Alfie and his parents, said she wanted the Home Office to look at the application “quickly”.
D’Ambrosio intends to tell MPs how he discovered the pain-relieving power of cannabis. Six years ago, he was an orthopaedic surgeon with a large number of patients suffering chronic pain after surgery, which led to opioid addiction. He began to wean them on to cannabis-based pain relief, which he says proved “a gateway out [of addiction]”.
“It completely changed the way I do medicine and it’s been the most rewarding six years of my life,” says D’Ambrosio. “It’s a wonder drug – maybe – but here’s the problem, we just don’t know enough about it. I say the Government should sign off on our studies, let us do the research. If we find at the end of it that cannabis is not helpful – or even be harmful – that’s important information.”
Cannabis is not currently recognised as having any therapeutic value under the law in England and Wales, but with one exception: Savitex, a cannabis-based therapy used mainly to calm muscle spasms associated with multiple sclerosis, can be prescribed by doctors – at their own risk – for named patients.
Campaigners want cannabis reclassified from a Schedule 1 Class B drug to a Schedule 4 controlled substance, which would enable doctors to prescribe more widely. Medical cannabis has been legalised in 32 states of the USA, Canada, Israel and Uruguay, and is allowed for use in certain conditions in 13 European countries including Germany, Italy, Spain, the Netherlands and Portugal.
While UK patients cannot benefit from it, Britain is the world’s largest exporter of cannabis for medicinal and scientific use, with 95 tons of legally produced marijuana in 2016, almost half the global total.
Billy was first given cannabis oil while being treated in America. After his return home to Castlederg, his GP prescribed him a steady supply for more than a year from a registered medical supply company. All the while, he copied in the Home Office and the Northern Ireland health department and nobody objected. Then, out of the blue, the GP was warned off by the authorities.
Caldwell was left in an impossible situation. “If you don’t have a prescription you can’t access medicine, even through the private route,” she says. “You can go on the black market but I would never do that.” Billy had five seizures last week compared to just a handful in the past year. Now, with his medicinal cannabis oil being returned, Charlotte can only hope he will get better and that the law will change soon to help him and others in the future.