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Children with epilepsy in the UK rejected cannabis prescriptions

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In countries around the world where medical cannabis is illegal, it is generally assumed that changing the law would provide safer access for patients. Children with life-threatening seizures are often the catalysts for change. However in United kingdomWith cannabis rescheduled in 2018, this group of extremely high-risk patients is struggling to find doctors willing to prescribe medical cannabis.

The main problem lies in a pitched battle between the professional body of pediatric neurologists, and the British Society of Pediatric Neurology (BPNA), parents desperate to get prescriptions for cannabis for their children with intractable epilepsy.

The Pediatric Neurology Association is hostile to cannabis

while the BPNA National regulations on prescribing medical cannabis to pediatric patients do not, they have made it impossible for doctors to do so. Through a series of actions that include reporting the pediatrician to the General Medical Council (GMC) and spread anti-cannabis guidelines so that none of the pediatric neurologists would risk prescribing it to their patients, they created a situation in which United kingdom Where only Epidiolex, GW Oral medications are approved Convention on Biological Diversity Isolate medicine, can be prescribed.

However, for many children with intractable epilepsy, Convention on Biological Diversity Alone is not enough, and only Convention on Biological DiversityRich hemp products that contain small amounts of THC Successfully control their spells.

But with no doctors willing to fully prescribe the cannabis plant and parents believing their children need it, the current predicament is an all-time low in action. Before that, children were at least able to obtain private prescriptions for unlicensed medicinal cannabis treatments through the few medical professionals who prescribe treatment from private clinics (and so far, only three children receive prescriptions for cannabis through the National Health Service).

Putting children at risk?

Dr. Nathan Hasson, a pediatric rheumatologist, decided to practice prescribing cannabis to better serve his young patients with a variety of chronic pain conditions. When he was approached to start prescribing cannabis-containing medications for children with epilepsy, he felt adequately equipped due to his background in general pediatrics and his training in medical cannabis.

With pediatric prescriptions in short supply, Dr. Hassoun’s list quickly grew to more than fifty children with epilepsy who had failed to control their seizures with a long list of anti-seizure medications. In all cases, pediatric neurologists were informed that cannabis was used as an additional treatment, however, according to Dr. Hassoun, contact was only one method.

“They received all my messages, everything, so they were fully informed,” he recalls. “Actually, this is how they all got together and complained because if I hadn’t written to them, and if the parents hadn’t told them, how would they have known about this?”

In total BPNA He complained twice about Dr. Hassoun. For the first time in a letter written by Professor Finbar O’Callaghan, then President BPNATo the private hospital where Hassoun was seeing his patients. The second time , BPNA Report Hassoun directly to the General Medical Council (GMC), with Callaghan useful That “Dr. Hassoun potentially put children at risk of harm through the manner in which he practices outside his field of expertise and without consulting the medical professionals who care for these complex children” – an accusation based on GMC And NHS Guidelines for prescribing cannabis.

With a “fitness to practice” call under investigation and an ongoing investigation, Dr. Hassoun was automatically dropped by all private medical insurance companies. As a result 75% of chronic pain patients have lost (and income).

However, somewhat confusing, that GMC He was allowed to continue treating epilepsy patients with medical cannabis. “Which was really a message in a way,” Hassoun says. “If what I was doing was so horrible, so bad, and so wrong, how did the court decide that I could continue?”

Proof of benefit, not harm

Which is exactly the conclusion he reached GMC Question. They found that Dr. Hassoun “provided appropriate care to the families who consulted him, with evidence of benefit, and no evidence of harm.”

Not only that, they refuted BPNA A position that only pediatric neurologists should initiate treatment, stating that it “is not supported by national guidance, and may not be in the best interest of children, as it may impede discussion and research into the appropriate use of CBD (sic) in treatment-resistant epilepsy.”

In the context of some of the great medical breakthroughs for medical cannabis in recent years, we know this is true. if Dr. Alan ShackelfordShe, who is not a pediatric neurologist, did not recommend that Charlotte try Figey Convention on Biological Diversity– Cannabis enriched to control her seizures, Convention on Biological Diversity And medical cannabis may not have been mainstream when it did, and Epidiolex may not have been around at all.

However, instead of softening their determination, they lose GMC It seems that the case made BPNA Just dig deeper into the trenches. They were recently released Updated routing to members about prescribing cannabis-containing drugs to children with epilepsy, which is taking a tougher and more unreasonable position.

sticking point for BPNA is that unlicensed whole plant cannabis-based products prescribed in private clinics have not been subject to the same randomized controlled gold standards as Epidiolex, and therefore do not have sufficient data on both safety and efficacy.

Catch 22: No randomized controlled trials

However, as stated in modern criticism According to the Association of Medical Cannabis Physicians, the complex molecular structure of most cannabis drugs does not fit well in randomized controlled trials, which typically focus on a single compound with a single intended outcome. This creates a quandary for cannabis in which real-world evidence – such as the numerous observational studies out of the US, Canada, Israel and Australia – is ignored. Data will also be collected currently by narcotics On a small group of children with intractable epilepsy receiving medical cannabis in United kingdom.

the BPNA It also highlights the purported risks posed by THC (THC) to the developing brain by citing studies examining the recreational use of altitude THC Cannabis in adolescents. However, the project Convention on Biological Diversity asserts that it is unscientific and unethical to use studies examining the recreational consumption of street cannabis by adolescents as criteria to exclude prescribing small amounts of cannabis THC For children with epilepsy. Furthermore, by denying them control over it Convention on Biological Diversity– The richness of the whole cannabis plant including THC, it might bring, these kids may not actually make it to the end of the year, let alone adolescence.

Other interests in play?

but still BPNAHer position seems unshakable. This may not be surprising to some main members Represented Professor Callaghan and Professor Helen Cross in the clinical trials of Epidiolex, and BPNA itself receives donations from GW pharma. Professor Callahan, by his side BPNA Fellow Professor Martin Kirkpatrick, as well publicly written on their concerns that “children with epilepsy are at risk of being used as a ‘Trojan horse’ for the cannabis industry,” an opinion that clearly falls outside their professional remit as pediatric neurologists.

the BPNA The directive also directs members not to specifically prescribe medical cannabis in cases where parents cannot pay for long-term treatment, stating “We consider it unethical to initiate treatment in private practice for which long-term funding is not available.” While it is true that private prescription cannabis for children with epilepsy can cost upwards of $2,000 per month, an amount that is unaffordable for most families as many resort to home remodeling or crowdfunding, should this in and of itself be the case? A reason to refuse a cannabis prescription?

An unethical excuse, says Dr. Bonnie Goldstein

Matt Hughes, Co-Founder and Director Medcan Support, an organization that supports children with epilepsy who seek cannabis treatment in United kingdomCharlie’s father, who is currently receiving a private prescription for his intractable epilepsy, says the doctor’s choice of prescribing cannabis should not depend on the family’s finances.

“The decision is up to the family,” he insists. “It should not be based on the clinical decision.”

Dr.. Bonnie GoldsteinHughes, a pediatrician in the Los Angeles area who has treated many children with epilepsy in the United States over the years, fully agrees.

“It’s not unethical to recommend something that a family might struggle to fund,” Goldstein says. “It is unethical to use this as an excuse. It is unethical for the NHS (and insurance companies in the world).” we) to choose not to help families pay for cannabis medicine when it helps a child, especially in cases where other medicines that have not worked before are paid for NHS/Insurance companies.”

“I’ve worked with hundreds of low socioeconomic families who have found ways to pay for their children’s medicines,” she says. “There are also many cannabis companies that are willing to discount or donate cannabis products if a child feels comfortable with their product.”

It will then appear that even in these extreme cases when children have tried every available remedy in vain and are really the point of no return, BPNA He would rather ignore both the evidence from the thousands of pediatric epilepsy patients around the world and the desperate pleas of parents, and instead deny them the possibility of knowing whether an unlicensed whole plant cannabis drug might reduce their children’s seizures and give them some hope for the future.

critical situation

The result is that a file United kingdom He currently finds himself in an awkward position as the only remaining pediatric cannabis prescriber is no longer accepting new patients. Thanks to the BPNAHostile directive, which explicitly advises members not to prescribe unlicensed cannabis drugs (contrary to recommendations from the National Institute for Health and Care Excellence), no new pediatricians, neurologist, or otherwise, are willing to put their heads above the barrier.

And despite offers from the Medical Cannabis Physicians Association to teach any pediatrician for free how to prescribe medicinal cannabis products, as well as provide ongoing guidance and support, it seems unlikely that this predicament will change in the near future.

“the BPNA They are thought to protect children, but that has had the opposite effect,” says Matt Hughes. “It forces families to seek out cannabis from illegal or over-the-counter sources, which inherently brings its own set of risks. Why BPNA This is believed to be an incredibly safe practice.

“Instead, children are left to suffer, families are left to suffer, and the devastating reality is that children are going to die when perhaps, just maybe, there is a drug that can change their lives.”


Mary Beals, United kingdomJournalist, Educator and Project Convention on Biological Diversity Contributing writer, is author the Convention on Biological Diversity the book (Harper Collins, United kingdom).

Copyright, Project Convention on Biological Diversity. It may not be reprinted without So.

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