A 12-year old boy with intractable epilepsy and his mother have been keeping the UK’s medical cannabis laws and how it deals with patients in the spotlight.
Billy Caldwell’s condition was such that he used to have up to 100 seizures per day. However, in 2016, Billy began taking cannabis oil on the recommendation of a childhood epilepsy expert in California – and his seizures stopped. Additionally, there was an improvement observed in his autism.
Billy was given the first medicinal cannabis prescription in UK/Ireland/Northern Ireland in April 2017, an event that was celebrated by medical cannabis supporters around the world. He was taking two medicines, one containing cannabidiol (CBD) and the other based on tetrahydrocannabinolic acid (THCA). This compound is a precursor to THC and does not have an intoxicating effect.
All seemed to be going well for Billy, there was even a CBD-based medicine developed bearing his name, “Billy’s Bud”. Apparently Billy’s Bud was going to be legally available in the UK and subsidised under the NHS.
However, his medicinal cannabis prescription was revoked recently by the UK’s Home Office, a situation that his mother Charlotte has said was the same as signing Billy’s death warrant.
“Not giving a little boy his medicine when he needs it is one thing, but taking away a little boy’s life saving medicine after allowing him to have it is just criminal,” said a post on the Keep Billy Alive Facebook page last week. “This has to be the most cruelest act I have ever witnessed. My heart is just breaking.”
In desperation, Ms. Caldwell still went to Canada recently to buy medication with the intent of bringing it back home. Ms. Caldwell made no secret of the fact; putting the Government in an interesting position – would they stop her given all the public support and coverage of Billy’s plight?
Unfortunately, it turned out they would. On returning to Heathrow Airport on Monday, the medicine was confiscated. The BBC reports Billy suffered his first seizure in more than 300 days on Tuesday.
Ms. Caldwell’s pleas with Home Office minister Nick Hurd to return the medication have been unsuccessful to date. A call has gone out to encourage people to email Minister Hurd, urging him to reverse his decision.
UPDATE June 16. It seems Billy’s condition continued to deteriorate after this news item was published and he has been hospitalised, but there may be some hope. According to The Guardian, the Home Office has said: “If the team treating Billy advise a particular course of urgent action, the Home Office will carefully consider what options are available to help facilitate that advice.”
UPDATE June 17. The UK Home Secretary has used an exceptional power to grant a Schedule 1 licence to allow Billy Caldwell to be treated with cannabis oil, based on the advice of senior clinicians who stated the situation is a medical emergency.