IN 2018 THE The agony of Billy Caldwell, a 12-year-old with epilepsy, forced the government to issue a license for medical cannabis. His seizures were controlled with a pharmaceutical grade oil from Canada. This set a real precedent. In July of that year, cannabis products became legal for patients with “exceptional clinical need”.
But legal does not mean it is available. Although adults for whom medical cannabis is suitable can usually obtain it with a private prescription, children cannot. Neither of the two physicians willing to prescribe medications in private deals with new patients. The parents of Jorja Emerson, a five-year-old who lives in Northern Ireland, say the family may have to move to Canada now that the doctor who prescribed them 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. However, for a few people, nothing seems to help. They may have hundreds of seizures a week and experience neurological damage that can be fatal. Some parents say that products containing small amounts of THC (THC), the psychoactive ingredient in cannabis, changed the lives of their children.
Disagreements about what works are common in medicine. Parents sometimes make unwise and ineffective choices. But cannabis is known to help with some forms of epilepsy: a licensed treatment for two types of the condition contains the non-psychoactive compound CBD. Many good studies, and some trials (albeit not randomized, the gold standard in medicine) support the case for THC.
The health minister, Maria Caulfield, says the access problem is a clinical issue, not a political one. Some blame new guidelines from the British Society of Pediatric Neurology (BPNA). The organization does not recommend the use of unlicensed cannabis products because it feels that there is insufficient data on safety and efficacy. Advance counseling pending trial results by NHS. This will not come before 2024.
Alasdair Parker, Consultant Pediatric Neurologist at Addenbrooke’s Hospital in Cambridge, is BPNAPresident. In animal experiments, cautions, small amounts of THC It made the seizures worse, not better. THC It is linked to psychological problems in teens, and some fear the long-term effects on brain development.
But for desperate parents, that caution breaks a little ice. Anxiety about long-term effects is felt when faced with an extremely poor quality of life and the threat of death, says Hannah Deacon. Her son Alfie (pictured) is one of three children to have a NHS prescription, and says he’s seen nothing but improvement in the four years he’s taken it. She adds that other parents are turning to the black market to buy a plant-based product that contains much higher levels of THC.
In difficult cases, physicians may make their own judgments when using “unlicensed” drugs. But the guidelines leave little room for that. More flexibility was expected, says David Jennings, a policy expert at Epilepsy Action, a charity, and that what has emerged has not only tightened rules on private prescriptions but implicitly suggested to doctors that “if something goes wrong, they will be held accountable”.
The argument is getting ugly. Parents are frustrated, says Jennings. Meanwhile, Dr. Parker says some pediatric neurologists feel “threatening, intimidated and harassed,” and suggests that some medical cannabis proponents have “financial interests in withdrawing our guidance.” David Knott, Professor of Psychopharmacology and Neuropsychology at Imperial College London, believes that BPNA Being obstructive, even unethical. He says he’s heard of children dying from a lack of accessible and 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 that contains both. THC and cannabidiol.
It remains to be seen how long it will take the experts to resolve their differences. In the meantime, expect to hear more distressed parents. That will make the issue political again – whether the health minister likes it or not. ■
This article appeared in the Britain section of the print edition under the heading “Hard Cases”.