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 supply of cannabis oil in her bag which was confiscated at customs. Caldwell insists it is the only treatment that has ever brought her son’s frightening condition under control and without it he will surely die.
Billy was rushed into hospital in the early hours of Saturday morning after suffering a severe fit following the withdrawal of his medicine. “It is beyond cruelty. We have now 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,” his mother said. The Home Office argued that the medicine was illegal, but then, 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 cannabis-based 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 in the process. She has travelled to America 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 6-year-old Alfie Dingley, whose parents have applied for a licence to use cannabis oil to treat him – have been chipping away at the wall of government intransigence over drugs policy for months. Could it be that Caldwell’s great, big emotional sledgehammer – a direct challenge to the law – now finally 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. 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 the country from Canada (where medicinal cannabis is legal) was always going to be a gamble but when Caldwell previously declared a similar stash of 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 confiscated: “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 stunning success, her emotive fight attracted national attention. The publicity clearly spooked Downing Street and an invitation to meet Home Office minister Nick Hurd – immediately – ensued. 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 he has been on. You just can’t do that. There must be weaning process because it’s so dangerous to remove an anti-epilepsy medication abruptly from a child with such a life-threatening condition.”
The hapless Hurd – officially minister for the fire service – had in any case only found himself handed this hot potato because it emerged the minister for drug policy, Victoria Atkins, is married to a man whose company works is in partnership with GW Pharmaceuticals, a UK biotech firm developing a synthetic drug from cannabis.
“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 not medically qualified, yet as a home office minister he’s making decisions about a little boy’s life.”
The pressure on the Home Office to now rethink the law in the long term is set to ratchet up another notch 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 briefing at Westminster to MPs and peers.
“If the government followed the lead of many of the states in America in legalising medical cannabis patients would benefit,” he says.
Dr Dan Poulter, Conservative MP for Central Suffolk and North Ipswich, 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 there’s good evidence that 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 suffers also 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 he suffered from more than 100 a month to fewer than ten.
Last month, the Dingleys applied for a licence to use the cannabis oil at home in Warwickshire. Asked about the case during 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 about the unusual way he discovered the potent power of cannabis. Six years ago, he was an orthopaedic surgeon with a large number of patients suffering chronic pain post-surgery which had led to opioid addiction. D’Ambrosio began to wonder if he could lessen his patients’ reliance on opioids by weaning them on to cannabis-based pain relief. The experiment proved to a success: “People say cannabis is a gateway drug but in my practice it has been a gateway out [of addiction],” he says.
He used the same method to treat chronic alcoholics, then, as word of his methods got round, patients with anxiety, sleeping problems and Parkinson’s started coming to his clinic: “I had to relearn medicine because I was dealing with problems that were not solvable with a knife and hammer. It completely changed the way I do medicine and it’s been the most rewarding six years of my life.”
D’Ambrosio says that this isn’t about money: he “doesn’t make a dime” out of helping patients access cannabis-based medications. But frustratingly, nor can he properly prescribe for his patients. Though cannabis-based medications are legal in his home state of California, doctors can do no more than issue a “letter of recommendation” to patients they think might benefit, which gives them access to a cannabis dispensary. The workers behind the counter then advise patients on what combination might be most effective for their condition.
That leaves cannabis stuck in a netherworld, medically-speaking, praised by many patients for its dramatic effect on their symptoms, yet without the legitimacy of extensive clinical trials. “It’s a wonder drug – maybe – but here’s the problem, we just don’t know enough about it,” says D’Ambrosio. “If we could get government to sign off on us doing studies we could tell whether it is or not. I say let us do the research. If we find at the end of it that cannabis is not helpful – or could even be harmful – that’s important information. We need to follow the evidence wherever it goes.”
As things stand, cannabis is not currently recognised as having any therapeutic value under the law in England and Wales, with one exception: Savitex, a cannabis-based therapy used mainly for calming muscle spasms associated with Multiple Sclerosis can be legally 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 already been legalised in 32 states of the USA, Canada, Israel and Uruguay and allowed for use in certain conditions in 13 European countries, including Germany, Italy, Spain, the Netherlands and Portugal.
Ironically, though patients in Britain are unable to benefit from the treatment, Britain is the world’s largest exporter of cannabis for medicinal and scientific use, with 95 tonnes of legally produced marijuana in 2016, almost half the world total.
Caldwell’s son Billy was first given cannabis oil while being treated in America and on returning home to Castlederg, Northern Ireland, the family GP provided prescriptions which furnished him with a steady supply for more than a year from a registered medical supply company. All the while, he cc-ed the Home Office and the Northern Ireland health department and nobody objected. Yet, after a year out of the blue, the GP was warned off by the authorities.
Caldwell found herself 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, ever do that. I would never give my little boy anything that wasn’t pharmaceutical standard.”
Billy has had five seizures this week compared to just a handful in the past year. Now, with his medicinal cannabis oil being returned, Charlotte can only pray and hope he will get better and that the law will change soon to help him and others in the future.
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