lN 2018 DE The suffering of Billy Caldwell, a 12-year-old with epilepsy, forced the government to issue a medical cannabis license. His attacks were controlled with a pharmaceutical grade oil from Canada. That set a de facto precedent. In July of that year, cannabis products were made legal for patients with “exceptional clinical need”.
But legal means not available. While adults for whom medicinal cannabis is suitable can usually obtain it on private prescription, children cannot. Neither of the two doctors who want to prescribe privately are not taking on new patients. The parents of Jorja Emerson, a five-year-old living in Northern Ireland, say the family may have to move to Canada now that the prescribing doctor has retired. Only three children, including Billy Caldwell, have received prescriptions from the National Health Service (NHS).
For most epileptic children, there are other, better options. But for some, nothing seems to help. They can have hundreds of seizures a week and suffer neurological damage, which can be fatal. Some parents say products with small amounts of tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, have changed the lives of their children.
Battles over what works are common in medicine. And desperate parents 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-done studies and some studies (though not randomized controlled trials, the gold standard in medicine) support the case for: THC.
Health Secretary Maria Caulfield says the problem with access is clinical, not political. Some blame new guidelines from the British Pediatric Neurology Association (BPNA). The organization discourages the use of unlicensed cannabis products because it believes there is insufficient data on safety and efficacy. It recommends waiting for the results of a process by the NHS. These would not come before 2024.
Alasdair Parker, a pediatric neurologist consultant at Addenbrooke’s Hospital in Cambridge, is the… BPNA‘s chairman. He warns against small amounts in animal experiments THC have made seizures worse, not better. THC has been linked to psychological problems in teens, and some fear long-term effects on brain development.
But for desperate parents, such caution cuts little ice. Concerns about the long-term effects feel lost when weighed against very poor quality of life and the risk of death, Hannah Deacon says. Her son Alfie (pictured) is one of three children with a NHS prescription, and she says he’s seen nothing but improvement in the four years he’s been taking it. Other parents are turning to the black market, she adds, to buy a plant-based product that has much higher levels of THC.
In difficult cases, clinicians can make judgments when using drugs “off-licence”. But the guidelines leave little room for that. David Jennings, a policy expert at Epilepsy Action, a charity, says more flexibility was expected, and what emerged not only tightened the rules for private prescriptions, but tacitly suggested to clinicians that “if something goes wrong, they’ll be held accountable.” are held” .
The argument gets ugly. Mr. Jennings says parents are frustrated. dr. Parker, meanwhile, says some pediatric neurologists feel “threatened, bullied and harassed”, and suggests that some medical cannabis advocates have “financial interests in withdrawing our guidance”. David Nutt, professor of neuropsychopharmacology at Imperial College London, thinks the BPNA is obstructive, even unethical. He says he has heard that children are dying from a lack of accessible, affordable medical cannabis and that his research, which has not yet been published, will show a 50-fold reduction in seizures when using a product containing both. THC and cannabidiol.
It remains to be seen how long the experts will take to resolve their disagreements. In the meantime, expect to hear more from noisy and troubled parents. That will make the issue political again – whether the health minister likes it or not. ■
This article appeared in the UK section of the print edition under the headline “Hard cases”