November 27, 2021
IN 2018 THE ailment of Billy Caldwell, a 12 year old with epilepsy, forced the government to issue a medical cannabis license. His seizures were controlled with a pharmaceutical oil from Canada. This has de facto set a precedent. In July of the same year, cannabis products were legalized for patients with “exceptional clinical needs”.
But legal means not available. While adults for whom medicinal cannabis is suitable can usually get it on a private prescription, children cannot. Neither of the two privately prescribing doctors accepts new patients. The parents of Jorja Emerson, a five-year-old who lives in Northern Ireland, say the family may be forced to move to Canada after the prescribing doctor retires. Only three children, including Billy Caldwell, were given prescriptions by the National Health Service (NHS).
For most epileptic children, there are other, better options. But with some, nothing seems to be working. You can have hundreds of seizures a week and suffer neurological damage that can be fatal. Some parents say that products containing low levels of tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, changed their children’s lives.
Disputes over what works are commonplace in medicine. And parents who run out of wisdom sometimes turn to unwise, ineffective options. However, cannabis is known to help with some forms of epilepsy: One treatment approved for two forms of the disease contains the non-psychoactive compound cannabidiol. Many well-conducted studies and some studies (though not randomized controlled ones, the gold standard in medicine) support the case for THC.
Health Minister Maria Caulfield says the problem with access is clinical, not political. Some blame new guidelines from the British Pediatric Neurology Association (BPNA). The organization does not advise against the use of unlicensed cannabis products because it believes there are insufficient data on safety and efficacy. It advises waiting for the results of a study by the NHS. These would not come before 2024.
Alasdair Parker, Consultant Pediatric Neurologist at Addenbrooke’s Hospital, Cambridge, is the President of BPNA. In animal studies, he warns, small amounts of THC made the seizures worse, not better. THC has been linked to mental health problems in teenagers, and some fear long-term effects on brain development.
But for desperate parents, such caution cuts little ice. Concern about long-term consequences feels like a sideline when weighing up a very poor quality of life and the risk of death, says Hannah Deacon. Her son Alfie (pictured) is one of three kids with an NHS prescription, and she says he has only seen one improvement in the four years he has taken it. Other parents are turning to the black market to buy a herbal product that has a lot more THC in it.
In difficult cases, doctors can make a judgment about using drugs “outside of the approval”. But the guidelines leave little room for this. David Jennings, a policy expert at Epilepsy Action, a charity, says more flexibility was expected and that what it found not only tightened the rules for private prescriptions, but also implied clinicians “if things go wrong, they will brought them to justice ”. .
The argument becomes ugly. Mr Jennings says parents are frustrated. Dr. Parker, meanwhile, says that some pediatric neurologists feel “threatened, bullied and harassed” and suggests that some medical cannabis advocates “have a financial interest in us withdrawing our guidance.” David Nutt, Professor of Neuropsychopharmacology at Imperial College London, thinks BPNA is a hindrance, even unethical. He says he has heard of children dying from a lack of accessible, affordable medical cannabis, and that his as-yet-unpublished research shows a 50-fold decrease in seizures when using a product that contains both THC and cannabidiol.
It remains to be seen how long it will take the experts to settle their differences. In the meantime, expect to hear more from noisy and desperate parents. This makes the subject political again – whether the Minister of Health likes it or not. ■
This article appeared in the United Kingdom section of the print edition under the heading “Hardcases”