Why Billy’s Law doesn’t go far enough
Features Charlotte Caldwell’s fight to legalise medicinal cannabis led to a law change. But, she tells Cara McGoogan, her campaign’s not over
Billy Caldwell’s epileptic seizures normally occur at nighttime and always start in the same way. His slight head, with straight, dark hair, lifts off the pillow and starts to nod. The 13-year-old, who has severe epilepsy and autism, stays silent and his eyes stare forwards as he slowly turns blue. Every muscle in his body starts to convulse with a tonic-clonic seizure.
If his mother, Charlotte Caldwell, doesn’t give him oxygen and medicine right away, Billy could die. It’s why Charlotte, 51, still sleeps every night next to him – she knows that her son’s next seizure could kill him.
In the past four weeks, Billy’s seizures have increased in frequency and severity, a development that epilepsy specialists say can happen as children approach puberty.
Despite the Government giving the green light to doctors to prescribe medicinal cannabis last week, the answer to Billy’s worsening condition lies still abroad. On the morning after “Billy’s Law” came into action, Charlotte wasn’t taking stock of her historic legal victory; instead, she was preparing for a 3,500-mile journey to Canada, the only place where Billy can still be legally treated. In the sitting room of the serviced apartment the Caldwells are staying in just off Great Ormond Street, there is a large, grey suitcase and an A4 notebook filled with Charlotte’s scribbles about Billy’s case.
Charlotte is pleased to have facilitated a landmark change in the law – which could give 6.7million people access to medicinal cannabis, according to the United Patients Alliance – but she says the Government hasn’t gone far enough. Doctors, she says, still need to be given more powers to prescribe cannabis products and not just when other treatments have been exhausted.
Equally, the latest legislation still makes it difficult to access cannabis medicines that have the psychoactive ingredient tetrahydrocannabinol (THC) in them, which, combined with cannabidiol (CBD), makes up the “lifesaving” dose her son Billy has been taking twice a day for the past two years. THC, which remains outlawed in the UK, can only be used in certain medical cases, when the amount is so small it wouldn’t have an intoxicating effect, and it can only be prescribed by a handful of medical professionals.
When I ask what the new law has done to help Billy, Charlotte pauses then says: “Nothing”. “If anything, it’s now more restricted,” she reflects. “As of Thursday, Billy’s doctor in Northern Ireland will not be able to carry on prescribing Billy’s medicine because it’s not a licensed product.”
This means, rather than celebrating after months of campaigning, Charlotte is now launching an “urgent appeal” to put Billy on an observational trial that would allow him to be treated in the UK – and mean the family could return to County Tyrone, Northern Ireland, for Christmas.
The case first came to the nation’s attention back in June when Billy nearly died after the Home Office confiscated a six-month supply of CBD oil with THC from the family at Heathrow Airport on their way back from a medical trip to Canada.
Just 14 hours without his medicine and Billy had a seizure. Over the next three days, the frequency and severity of seizures increased until Charlotte called 999 on the Friday and took him to Chelsea and Westminster Hospital.
“I thought I’d lost him,” Charlotte recalls. “At that stage, there was no hope of him getting back his medicine, which was in the vaults of the Home Office.”
With Billy’s doctor declaring it a “medical emergency” and the country watching this little boy’s plight, the Home Office came up with an unprecedented solution. Home
Javid issued an “exceptional” 20-day licence for a “shortterm emergency” that allowed Billy to have the substance administered in a medical setting. On
Saturday morning, the medicine was sent in a taxi to Chelsea and Westminster Hospital and Billy was given a small dose.
“It was the first time ever that medicinal cannabis was administered in a hospital in the United Kingdom via a doctor,” says Charlotte. “It was incredible. I saw my little boy come back to life right in front of my eyes. Even the nurses were emotional.”
By Monday, Billy had stabilised and was discharged. “Everybody was praying for him, the whole United Kingdom prayed that he was going to recover. Thankfully, he did.”
Before he started taking medicinal cannabis, Billy could have up to 100 seizures per day and was hospitalised almost weekly. Doctors cycled through nearly all epileptic drugs available, at times putting him on a combination of four or five at once. “They never worked,” says Charlotte. In 2016, an exasperated Charlotte “walked the streets of Northern Ireland with a bucket in hand, in the rain, hail and snow”, raising £170,000 to take Billy to a world-renowned epilepsy specialist in California. She says she “didn’t go to Los Angeles looking for medicinal cannabis”, but was desperate enough to be open-minded when the doctor referred Billy to a research centre.
“It wasn’t something you would buy in a retail store or on the black market,” she says. “I have never given Billy medicine from the black market and never would.”
After months of tests in the US and a second round of fundraising – for which Billy’s elder brother Kyle, 34, ran a 350km loop of the Irish coastline with a 4.5-stone weight on his back – Charlotte and Billy returned with a personalised medicinal cannabis prescription.
A week after his six-month supply of CBD oil was confiscated and then returned, Mr Javid finally announced the legalisation of medicinal cannabis. But Charlotte is now hoping the Government can give him a Christmas gift, too. “An observational trial in the UK, that is Billy’s Christmas present,” she says, because it’s the only way Billy can be prescribed at home the strain of CBD and THC that he requires.
Given the deterioration of Billy’s condition in the past month – five seizures in the last week alone – the need is imperative. It is possible that he will need a different dosage as his body matures with puberty, and Charlotte and Billy are flying to Canada soon after we meet for a review.
Under the new guidelines, Billy wouldn’t be able to test unlicensed combinations of CBD and THC in the UK unless he did so as part of an observational trial, monitored by British clinicians.
“We urgently need someone from one of the royal colleges, a medical professional body or a specialist clinician to come forward and start Billy on a trial,” she says. “That is the only way we can come home.”
She adds that medicinal cannabis needs to quickly be made available for those who need it. If not, she says, “it is only a matter of time before a child loses their life”.
Charlotte has fought long and hard but there’s no chance of her giving up. “We’re not going to stop until we’ve got to the stage where medicinal cannabis is available on prescription via the NHS for everybody who needs it,” she says. “When you see your child have a life-threatening seizure and you don’t know if it’s going to stop, you don’t have time for exhaustion.
“You have to keep going and you have to do everything to prevent his death. Billy is my world.”
‘It was incredible. I saw my little boy come back to life right in front of my eyes’
Frustration: Charlotte with Billy, whose seizures are controlled by a medicinal cannabis that is not available in the UK