Children should not be allowed to suffer in 2024. By Ali Pink & Green.
The year is 2018, and UK law is finally changed to allow access to patients resistant to other treatments to access cannabis to manage their symptoms. History is made and children such as Billy Caldwell and Alfie Dingley [1][2], are prescribed it for treatment-resistant epilepsy, by the National Health Service. Fast forward over five years and it remains a reason for rejoicing that Billy, now a young man, has been seizure-free for a long time [3], as has Alfie [4]. But for many families of children with similar health conditions, the reality is stark to say the least, and far from a reason for celebration. The assumption, the expectation, was that this would lead to more such prescriptions and that sick children would finally get effective, affordable treatment and the quality of life they deserve, and we can offer them. But virtually no more prescriptions have been written by the National Health Service [4].
Although now in 2024 cannabis is now widely available for the treatment of a plethora of physical and mental health symptoms, this has turned out to be almost exclusively via private healthcare, and although the prices have dropped over time, they still remain outrageously high.
This is bad enough for those just requiring cannabis flower, but in cases such as those of these children, large quantities of oil are required to effectively manage their seizures. Because of production costs and because it requires so much cannabis flower to make cannabis oil. the price can go into thousands of pounds per month.
I spoke to an experienced cannabis grower with ten years experience making their own full extract cannabis oil to treat their own medical conditions. They told me that 1oz or 28g of cannabis will produce just 5 ml of full extract cannabis oil (slightly less or more if using higher or lower temperatures to activate different cannabinoids). This is what drives the monthly cost from hundreds up to thousands per month for these families, which for most is barely affordable in the short-term, yet alone for several years and counting. The parent of one child who has Intractable Epilepsy [5], told me that their child could have several thousand seizures in a month. However, when cannabis oil was given as treatment, these reduced to well under 100, almost a 99% reduction.
Clinical trials or not, that's surely a pretty compelling argument for its efficacy. Although prices have come down a fair bit over time, the family are still having to find almost £1900 every month in order to give their child the medicine they need, and this has been the case for years now. They can't cut costs, because this is what works. I've heard of children becoming more sick as a result of having out of date oil in order to try and do so. Tragically last year, Ava Barry, a child of only 13 years of age, passed away after losing her fight for life [6]. How is any of this right when we know what helps these children?
Financial cost is, alas, not the only dilemma facing parents. Interim measures have been put in place post-Brexit, for example, to continue supply of Bedrocan Oil [7] to the UK until it can be produced here, but continued stock issues and product discontinuation mean that even now, parents are having to travel abroad to illicitly obtain the oils they can't get [9], as Charlotte Caldwell and Hannah Deacon (Alfie's mum) were all those years ago. Even with the law change, they're being forced to break it, when that's the last thing they want to be doing. Products like Epidiolex [10], which can be prescribed by the National Health Service, don't work for them as they don't contain any Tetrahydrocannabinol (THC). And what is being offered by the National Health Service as an alternative? I suggest you sit down for this bit: Brain Surgery!
What actually prompted me to write this article was that the families of not one but two epileptic children, Alfie Griffin [11] and Teagan Appleby, were facing the impossible decision as to whether to agree to brain surgery on their children. There are risks with any surgery, not least from general anaesthetic, both to life and in terms of long-term resulting damage such as impaired mobility, personality changes, sight loss, memory issues and more. And they're not even guaranteed to work. Here's a quote from the Epilepsy Society [12]:
“Around 70% of people (7 in 10 people) who have temporal lobe surgery find that the surgery stops their seizures and they become seizure-free, and for a further 20% (1 in 5 people) their seizures are reduced.”
So that's 10% of people who don't respond to it anyway.
How can any society have the audacity to call itself civilised when that's its alternative to a safe, natural product that's been proven to work? Up until it was added to the Dangerous Drugs Act in 1928 [13][14], cannabis was a legal and prescribed medicine in this country and hemp, a multi-tasking nutritious and widely available food source. I can't think of another example of something that has been stopped for such a major use as treatment of health issues without any apparent published evidence as to why the retraction. It was politically motivated. This is why I've always found the hefty ‘Burden of Proof' for safety and efficacy, in the guise of saying there aren't enough clinical trials, weak to scrutiny. Particularly when only one company ever seems to be allowed to conduct any [15] and countries all over the world have been collecting evidence and lifting cannabis prohibition laws for years [16][17].
It's been publicly admitted by President Biden [18] in the United States of America that the criminalisation of cannabis was racially motivated and there are audio recordings of Richard Nixon, one of the architects of the War On Drugs, explicitly saying so [19]. Even privately we won't prescribe it as a Cancer treatment (only for symptoms) despite swathes of people round the globe, including myself, who would happily testify that it very clearly resulted in successfully reducing our tumours to nothing. People are being locked in overburdened and overcrowded prisons for providing it. Dr Mechoulam and his team discovered that we have an Endocannabinoid System [20][21], a system of receptors located throughout the human body, that cannabis directly interacts with, over 30 years ago. Why wasn't that bombshell alone a reason to revisit our laws and start conducting more research? I can't say this often enough…There are no recorded deaths from cannabis use alone…. anywhere….ever!! [22]
This feels like a never-ending battle, but in the meantime, more children and adults are becoming sicker, sometimes dying, because of the stubbornness of our politicians (neither of the major two parties in the UK support decriminalisation). I realise there's tremendous anger in the UK towards the political system right now, and many of us feel that nobody is representing our views, but each and every one of us has a Member of Parliament who should be representing us. Please, please consider writing to them to get them to address this issue and raise it in Parliament. Because things have to change and it's urgent now. Beyond urgent. Until they do, please also consider donating to the Intractable Charity [23], helping such children with funding costs (I have no affiliation with them, but it's an excellent cause). Let's give our children the quality of life they deserve!
References & Citations
Gayle, D. (2018) 'Medicinal cannabis: how two heartbreaking cases helped change law,' The Guardian, 26 July.Available online at:https://www.theguardian.com/society/2018/jul/26/medicinal-cannabis-how-two-heartbreaking-cases-helped-change-law. [Accessed 12 January 2024]
Department of Health and Social Care (2018) Medicinal cannabis: information and resources. Available online at:https://www.gov.uk/government/collections/medicinal-cannabis-information-and-resources.[Accessed 12 January 2024]
Taylor, A. (November 2023) Private prescriptions. Available online at: https://alipinkandgreen.com/private_canna_script.html.[Accessed 12 January 2024]
ITV News (2023) 'Mum praises medical cannabis after son who had 1,000 fits a month now seizure free,' ITV News, 14 November. https://www.itv.com/news/central/2023-11-14/praise-for-medical-cannabis-after-son-who-had-epileptic-fits-is-seizure-free.[Accessed 12 January 2024]
Intractable epilepsy (2017).Available online at:https://stanfordhealthcare.org/medical-conditions/brain-and-nerves/intractable-epilepsy.html.[Accessed 12 January 2024]
Riegel, O.K. and R. (2023) 'Teenage daughter of medicinal cannabis campaigner Vera Twomey dies,' Independent.ie, 27 May.Available online at:https://www.independent.ie/irish-news/teenage-daughter-of-medicinal-cannabis-campaigner-vera-twomey-dies/a1690076689.html.[Accessed 13 January 2024]
Consultants, M.T. (2023) '5 Years of Medical Cannabis in the UK: progress but a long way to go,' (Full Report). MapleTreeConsultants, 2 November. Available online at: https://www.mapletreeconsultants.co.uk/post/5-years-of-medical-cannabis-in-the-uk-progress-but-a-long-way-to-go.[Accessed 14 January 2024]
Elsom, J. (2021) 'Parents of children with severe epilepsy warn cannabis medication stopping after Brexit,' Mail Online, 7 January.Available online at:https://www.dailymail.co.uk/news/article-9122169/Parents-children-severe-epilepsy-warn-cannabis-medication-stopping-Brexit.html.[Accessed 12 January 2024]
Sinclair, S. (2023a) '‘Our children have been left behind’ – How UK medical cannabis policy failed families,' Cannabis Health News, 17 July.Available online at:https://cannabishealthnews.co.uk/2023/07/17/how-uk-medical-cannabis-policy-failed-families/.[Accessed 12 January 2024]
Abu-Sawwa, R. and Stehling, C. (2020) 'Epidiolex (Cannabidiol) primer: Frequently asked questions for patients and caregivers,' The Journal of Pediatric Pharmacology and Therapeutics, 25(1), pp. 75–77.Available online at:https://doi.org/10.5863/1551-6776-25.1.75.[Accessed 12 January 2024]
Calpin, D. (2024) 'Peterborough family asked doctors for medical cannabis prescription for epileptic son; NHS offered brain surgery,' Peterborough Telegraph, 3 January.Available online at:https://www.peterboroughtoday.co.uk/news/people/peterborough-family-asked-doctors-for-medical-cannabis-prescription-for-epileptic-son-nhs-offered-brain-surgery-4465289.[Accessed 12 January 2024]
Epilepsy surgery | Epilepsy Society (2023).Available online at:https://epilepsysociety.org.uk/about-epilepsy/treatment/epilepsy-and-brain-surgery.[Accessed 12 January 2024]
A historical overview of cannabis legality in the UK (2023).Available online at:https://releaf.co.uk/education/cannabis-101/history/an-historical-overview-of-cannabis-legality-in-the-uk.[Accessed 12 January 2024]
Weil, M. (2023) Why and when did marijuana become illegal?Available online at:https://cannigma.com/regulation/a-story-of-smoke-and-mirrors-how-cannabis-became-illegal-around-the-world/.[Accessed 13 January 2024]
Wikipedia contributors (2023) GW Pharmaceuticals.Available online at:https://en.m.wikipedia.org/wiki/GW_Pharmaceuticals.[Accessed 13 January 2024]
Xabregas, J. (2023) The world map of cannabis legalization - CannaReporter.Available online at:https://cannareporter.eu/en/2023/01/04/the-world-map-of-cannabis-legalization/.[Accessed 13 January 2024]
Kwai, I. (2020) 'U.N. Reclassifies Cannabis as a Less Dangerous Drug,' The New York Times, 2 December.Available online at:https://www.nytimes.com/2020/12/02/world/europe/cannabis-united-nations-drug-policy.html.[Accessed 14 January 2024]
White House. (2022) Statement from President Biden on Marijuana Reform.Available online at:https://www.whitehouse.gov/briefing-room/statements-releases/2022/10/06/statement-from-president-biden-on-marijuana-reform/.[Accessed 14 January 2024]
Nixon tapes reveal origins of today’s drug war | Common sense for drug policy (2003).Available online at:https://www.csdp.org/node/30.[Accessed 14 January 2024]
Silow-Carroll, A. (2023) 'Raphael Mechoulam, Israel’s ‘father of cannabis research,’ dies at 92,' Jewish Telegraphic Agency, 10 March.Available online at:https://www.jta.org/2023/03/10/obituaries/raphael-mechoulam-israels-father-of-cannabis-research-dies-at-92.[Accessed 14 January 2024]
Lowe, H. et al. (2021) 'The endocannabinoid system: a potential target for the treatment of various diseases,' International Journal of Molecular Sciences, 22(17), p. 9472. https://doi.org/10.3390/ijms22179472.[Accessed 14 January 2024]
Lake, S., Socías, M.E. and Milloy, M. (2020) 'Evidence shows that cannabis has fewer relative harms than opioids,' Canadian Medical Association Journal, 192(7), pp. E166–E167. Available online at: https://doi.org/10.1503/cmaj.74120.[Accessed 14 January 2024]
About us | Intractable epilepsy (2020-2023). Available online at: https://www.intractable.org.uk/about-us.[Accessed 14 January 2024]