IN 2018 ON The suffering of 12-year-old Billy Caldwell, a teenager with epilepsy, has forced the government to license medical cannabis. His seizures were checked with a pharmaceutical grade oil from Canada. This set a de facto precedent. In July of the same year, cannabis products were made legal for patients with “exceptional clinical need”.
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But legal doesn’t mean available. While adults for whom medical cannabis is appropriate can usually obtain it by private prescription, children cannot. Neither doctor willing to prescribe privately is accepting new patients. Parents of five-year-old Jorja Emerson who lives in Northern Ireland say the family may be forced to move to Canada now that the prescribing doctor has retired. Only three children, including Billy Caldwell, received prescriptions from the National Health Service (NHS).
For most children with epilepsy, there are other better options. Yet for a few, nothing seems to help. They can have hundreds of seizures per week and suffer neurological damage, which can be fatal. Some parents say that products containing small amounts of tetrahydrocannabinol (THC), the psychoactive ingredient in cannabis, have transformed the lives of their children.
Quarrels over what works are common in medicine. And parents at their wit’s end sometimes turn to ill-advised and ineffective options. But cannabis is known to help with certain forms of epilepsy: a licensed treatment for two forms of the disease contains the non-psychoactive compound cannabidiol. Many well-conducted studies and some trials (but not randomized controlled trials, the gold standard in medicine) support the case for THC.
Health Minister Maria Caulfield says the problem of access is clinical, not political. Some blame the new guidelines from the British Pediatric Neurology Association (BPNA). The organization does not recommend the use of unauthorized cannabis products because it believes there is insufficient data on safety and effectiveness. He advises to wait for the results of a trial by the NHS. These wouldn’t come until 2024.
Alasdair Parker, consultant pediatric neurologist at Addenbrooke’s Hospital in Cambridge, is the BPNAthe president of. In animal testing, he cautions, small amounts of THC worsened the seizures, not better. THC has been linked to psychological problems in adolescents, and some fear long-term effects on brain development.
But for desperate parents, such caution cuts little ice. Concerns about the long-term effects arise when compared to a very poor quality of life and the risk of death, explains Hannah Deacon. 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 product that contains much higher levels of THC.
In difficult cases, clinicians can exercise judgment when using “off-license” drugs. But the directives leave him little room. David Jennings, a policy expert from Epilepsy Action, a charity, said more flexibility was expected and what came out not only strengthened the rules on private prescriptions, but also tacitly suggested to clinicians that “if something goes wrong, they will be held accountable.”
The argument turns out badly. Mr. Jennings says parents are frustrated. Dr Parker, meanwhile, says some pediatric neurologists feel “threatened, intimidated and harassed”, and suggests that some supporters of medical cannabis have “a financial interest in us withdrawing our advice.” David Nutt, professor of neuropsychopharmacology at Imperial College London, believes that the BPNA is obstructive and even unethical. He says he has heard of children dying from lack of accessible and affordable medical cannabis and that his still unpublished research 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 it will take for the experts to resolve their differences. In the meantime, expect to hear more from vocal and distressed parents. This will make the matter political again — whether the Minister of Health likes it or not. ■
This article appeared in the Great Britain section of the print edition under the title “Hard cases”