IN 2018 THE suffering of Billy Caldwell, a 12-year-old with epilepsy, forced the government to issue a licence for medical cannabis. His seizures were controlled with a pharmaceutical-grade oil from Canada. That set a de facto precedent. In July that year cannabis products were made legal for patients with “exceptional clinical need”.
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But legal does not mean available. Although adults for whom medical cannabis is appropriate can usually get it on a private prescription, children cannot. Neither of the two doctors willing to prescribe privately is taking on 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 now that the prescribing doctor has retired. Just three children, including Billy Caldwell, have been given prescriptions by the National Health Service (NHS).
For most epileptic children there are other, better options. Yet for a few, nothing seems to help. They may have hundreds of seizures a week and suffer neurological damage, which can prove fatal. Some parents say products with small amounts of tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, have transformed their children’s lives.
Tussles about what works are common in medicine. And parents at their wits’ end sometimes turn to unwise, ineffective options. But cannabis is known to help with some forms of epilepsy: a treatment licensed for two forms of the condition contains the non-psychoactive compound cannabidiol. Many well-run studies, and some trials (though not randomised controlled ones, the gold standard in medicine) support the case for THC.
The health minister, Maria Caulfield, says the problem with access is clinical, not political. Some blame new guidelines from the British Paediatric Neurology Association (BPNA). The organisation does not advise the use of unlicensed cannabis products because it feels there are not enough data on safety and efficacy. It counsels waiting for the results of a trial by the NHS. These would not come before 2024.
Alasdair Parker, a consultant paediatric neurologist at Addenbrooke’s Hospital in Cambridge, is the BPNA’s president. In animal trials, he warns, small quantities of THC have made seizures worse, not better. THC has been associated with psychological problems in teenagers, and some fear long-term effects on developing brains.
But for desperate parents, such caution cuts little ice. Worries about long-term effects feel by-the-by when weighed against a very poor quality of life and the risk of death, says Hannah Deacon. Her son Alfie (pictured) is one of the three children with an NHS prescription, and she says he has seen nothing but improvement in the four years he has taken it. Other parents are turning to the black market, she adds, to buy a plant product that contains much higher levels of THC.
In tough cases clinicians may exercise judgment when using medicines “off-licence”. But the guidelines leave little room for it. David Jennings, a policy expert with Epilepsy Action, a charity, says more flexibility had been expected, and that what emerged not only tightened the rules on private prescriptions but also tacitly suggested to clinicians that “if anything goes wrong they will be held accountable”.
The argument is turning ugly. Mr Jennings says parents are frustrated. Dr Parker, meanwhile, says that some paediatric neurologists feel “threatened, bullied and harassed”, and suggests that some proponents of medical cannabis have “financial interests in us withdrawing our guidance”. David Nutt, a professor of neuropsychopharmacology at Imperial College London, thinks the BPNA is being obstructive, even unethical. He says he has heard of children dying for lack of accessible, affordable medical cannabis and that his research, as yet unpublished, will show a 50-fold decrease in seizures when using a product that contains both THC and cannabidiol.
It remains to be seen how long the experts will take to resolve their differences. In the meantime, expect to hear more from vocal and distressed parents. That will make the issue political again—whether or not the health minister likes it. ■
This article appeared in the Britain section of the print edition under the headline “Hard cases”