Mother and prominent campaigner, Hannah Deacon has pleaded with the Prime Minister to help secure access to medical cannabis for her son and other patients.
Hannah Deacon has been left fearing for her nine-year-old son, Alfie Dingley’s life after his life-saving cannabis medication was stopped because of Brexit.
Supplies of certain cannabis oils, which are imported from the Netherlands, have been terminated following the end of the Brexit transition period on 31 December, leaving dozens of families without access to life-saving medication.
Over 40 patients who have been prescribed certain cannabis-based medicines (CBMPs) in the UK but can only obtain their prescription through the Transvaal pharmacy, which is based in the Netherlands.
Hannah and other patients in the same position, were given just two weeks notice by the Department of Health and Social Care (DHSC) – and were only made aware of the change through a letter sent to UK importers, clinics and patient groups, which she has described as “disgraceful”.
It stated that prescriptions issued in the UK ‘can no longer be lawfully dispensed in an EU Member State’ meaning dispensing Bedrocan products in the Netherlands for UK prescriptions is ‘no longer an option’ from 1 January 2021.
Alfie Dingley, nine, who has a rare form of severe epilepsy, became the first UK child to receive a permanent license for medical cannabis, following Hannah’s high profile campaign to help change the law in 2018.
He is now prescribed Bedrolite oil on the NHS – the medication recommended by his doctor – but Hannah says she only has around six weeks of supplies left.
Before beginning treatment with the oil Alfie’s life had been dominated by clusters of epileptic seizures that began at just eight months old. On one occasion this resulted in a three-week stint on life support in intensive care.
He has now been almost completely seizure free for well over a year and is able to attend school and live a relatively normal life.
But Hannah fears that stopping his treatment could be catastrophic.
“Without access to his medication Alfie would likely go back to having dozens of seizures, any of which could potentially be life-threatening,” she said.
“The progress he has made on Bedrolite is amazing, why would they take away a medicine that is working?”
The DHSC has advised pharmacies to find “alternative” prescriptions to switch patients onto, but as Hannah points out, each variety of cannabis medicine is different and what works for one patient does not necessarily work for another.
“A clinical decision to prescribe Bedrolite has been made by Alfie’s doctor and to change it to anything else would be dangerous,” she continued.
“Just because an oil has CBD and THC in it doesn’t mean it’ll have the same effect.”
Professor Mike Barnes, founder of the Medical Cannabis Clinicians Society, who obtained the first full license to prescribe medical cannabis in the UK, explained: “Each variety of cannabis is subtly different and you can’t just swap a child from one product to another.
“It shows an astonishing level of ignorance to think that every cannabis product is the same when there are 147 different cannabinoids in each plant.”
Prof Barnes described the situation as “appalling”.
He added: “It is not an exaggeration to say that one or two children will die if they can no longer access this medication.”
Hannah has contacted Boris Johnson directly and is now making a public plea to him and Health Secretary Matt Hancock to step in and find a permanent solution.
“I am very fortunate to have an NHS prescription for Alfie, but now it feels as though we are back at square one, after years of fighting for access to this life-saving medication for us and other families.
“The COVID pandemic has shown that the Government is willing to take any action necessary to protect lives. This is not about politics, children are at risk.
“I will fight this all the way and I urge Boris Johnson to step in, work with the Dutch Government and help us.”
In a statement released on Wednesday 6 January, the Centre for Medical Cannabis (CMC) said it was “concerned” by reports that UK patient’s supplies to medical cannabis have been cut off.
The CMC says it has engaged with the DHSC throughout 2020 to find alternative products that may be “suitable for substitution under careful medical supervision”, for patients who will be affected.
It continued that the situation illustrates the need for a “broad and customised range of cannabis medicines” that can be “rapidly and cost effectively” imported into, or developed and produced within the UK.
“Supply issues and discontinuations of medicines have always been a difficult challenge for the medical community to deal with, especially when dealing with vulnerable patients who are stabilised on a particular medicine,” explained Dr Andy Yates, pharmacy lead for CMC.
“This situation is exacerbated when you are dealing with a complex medicine such as CBMPs. Working with our members, we have been able to provide the DHSC with a list of CBMPs that may be suitable for substitution, but as the article points out they do have differences in composition and would therefore require careful medical management if a solution to supplying Transvaal products cannot be found.”
The centre has advised families to seek alternative legal routes to obtaining cannabis based medicines in the UK, although this is currently only possible through private prescriptions.
In a response to Cannabis Health, a DHSC spokesperson said: “We sympathise with patients dealing with challenging conditions and there is a range of alternative cannabis-based medicines available to UK patients.
“The decision on what treatments to prescribe to patients is rightly one for clinicians to make, on a case-by-case basis and dependent on the specific needs of the individual.
“If patients have any concerns, they should discuss them with their doctor.”
Provacan brings high-strength, 72% CBD to UK
The science-led brand is bringing the latest cannabis technology to the UK with two high potency CBD formulas.
Provacan, the CBD brand from cannabis research company CiiTECH, has introduced the two 72 percent products as part of its popular VapePod range developed in partnership with Kanabo.
The Provacan range of VapePod compatible pre-filled pods have grown to become one of the company’s most popular vape products.
The VapePod device was developed by Israel-based Kanabo Group and provides users with a certified, safe and effective vaporisation system with innovative metered dosing with high bioavailability.
Vaporisation of CBD improves the rate of absorption when compared to other means such as ingestion.
The device optimises efficiency while delivering CBD formulas more safely and simply. It can only be used with compatible pre-filled cartridges, such as Provacan’s Day and Night pre-filled pods.
Kanabo recently became the second cannabis company to list on the London stock exchange.
This is a revolutionary step for the VapePod entering the medical cannabis scene in the UK and is vital for patients for whom this delivery method will replace the smoking of cannabis flowers.
Avihu Tamir, CEO at Kanabo, said: “We are pleased to have CiiTECH as a partner in the UK for developing pure innovative hemp formulas. The unique formulas are coupled with the VapePod platform which give consumers great satisfaction in knowing that they’re getting the most out of their CBD.”
Building on the popularity of the 55 percent CBD VapePod range, Provacan has worked with Kanabo Research to launch two new higher strength vape formulas for its customers.
The all-new Night Terpene and Day Terpene CBD VapePod formulations contain 72 percent CBD together with other minor cannabinoids and a potent mix of terpenes.
Terpenes are widely used and can be found in essential oils and aromatherapy.
Additionally, the all natural pods are free from traces of pesticides, heavy metals and solvents and don’t containing PG, VC, MCT, nicotine or vitamin E.
Provacan is part of the growing portfolio of brands by leading British cannabis company CiiTECH Ltd, with R&D management based in Israel.
Founded by Clifton Flack in 2017, Provacan is the flagship brand within the portfolio and focuses on bringing the latest cannabis technology to its loyal consumers in the UK and across the world.
Partnerships with international medical cannabis research companies fuel CiiTECH’s product development and provide brands like Provacan with forward thinking industry knowledge and the ability to create highly respected science-backed CBD products for sale in the UK today.
Eli Whiteman, CiiTECH’s VP business development, said: “Our partnership with Kanabo goes back a long way and beyond technological innovation. Our main priority is to strive to ensure our customers have access to a superior combination of bioavailability, unique delivery systems and consistent CBD products that they can rely on.
“We achieve this by channelling consumer demands into product development and by partnering with like minded medical cannabis companies that do the same.”
The new Night Terpene CBD and Day Terpene CBD VapePods are available from Provacan now, retailing at £49.99 each. To find out more information about the products, visit https://provacan.co.uk/vapes/.
Integro Medical Clinics: How cannabis can help manage migraine pain
The experts at Integro Medical Clinics explain how cannabis medicines can help manage and alleviate the excruciating pain of migraine.
Migraine can be a devastating and utterly miserable condition that can have a profound effect upon the patient’s quality of life.
But medical cannabis can offer a really effective, side-effect free treatment option, as we see in our patients’ story with Mike.
A migraine is categorised as a moderate or severe headache felt as a throbbing pain on one side of the head. It is generally accompanied with symptoms such as feeling sick, vomiting and increased sensitivity to light or sound.
It’s a common health condition, affecting around one in every five women and around one in every 15 men and they usually begin in early adulthood.
No one knows exactly what causes migraines, although they are thought to be the result of temporary changes in the chemicals, nerves and blood vessels in the brain.
Many patients find they have a specific trigger such as certain food or drink, stress, tiredness or hormonal changes such as starting your period. Around half of all people who experience migraines also have a close relative with the condition.
There are several types of migraine, including:
migraine with aura – where there are specific warning signs just before the migraine begins, such as seeing flashing lights
migraine without aura – the most common type, where the migraine happens without the specific warning signs
migraine aura without headache, also known as silent migraine – where an aura or other migraine symptoms are experienced, but a headache does not develop
The frequency of the occurrence of migraines really depends upon the individual. It can be several times a week to every few years.
There’s no one specific cure for migraines. Patients try pain medicines such as paracetamol and ibuprofen and triptans to help with the pain but these medicines are often ineffective.
If you suspect a specific trigger is causing your migraines, such as stress or a certain type of food, avoiding this trigger may help reduce your risk of experiencing migraines.
It may also help to maintain a generally healthy lifestyle, including regular exercise, sleep and meals, as well as ensuring you stay well hydrated and limiting your intake of caffeine and alcohol.
Cannabis medicines have been found by certain patients to be incredibly helpful in the management of pain.
Dr Anthony Ordman, senior clinical adviser and hon. clinical director of Integro Clinics explains why: “Recent medical scientific research is showing that cannabis medicines can have several useful roles in the prevention of migraine, and also reducing pain if a migraine attack does occur.
“It is likely that substances in cannabis medicines (plant-derived CBD, THC and terpenes) all have roles to play and that they supplement the activity of the brain’s naturally occurring endocannabinoid system. This system may be under-active in people prone to migraine.
“There are three likely mechanisms by which cannabis medicines may be effective. Firstly, the natural stabilising or anticonvulsant effect of the cannabinoids suppresses the spreading abnormal wave of voltage depression in the brain’s cortical neurones. This wave precedes all migraine attacks and causes the aura familiar to migraine sufferers.
“Secondly, cannabis substances are thought to stabilise the mast cells of the immune system. In migraine, mast cells are involved in dilatation, or opening up of the blood vessels of the brain’s lining (dura), causing that familiar pulsating headache. Cannabis medicines may prevent this process from occurring.
He adds: “And finally, as in other painful conditions, if a migraine does occur, cannabis medicines are likely to block the transmission of pain messages in nerves running from the brain stem to the pain centres of the brain, to reduce pain itself.
A recent study showed that cannabinoids may reduce migraine severity by 49.6 percent without causing the ‘overuse headache,’ that other pain medicines such as paracetamol may cause.”
The patient’s story
Mike is a physically fit 37-year-old South African, who first experienced migraines as a teenager.
The pain he suffered was agonising and totally debilitating. It disturbed his vision, caused nausea and deep pain. Prior to the onset he experienced the aura of lights and would go blind in one eye.
An attack could wipe out days of his life whilst he recovered. For several days after the attack, he would feel befuddled and that his brain was not working properly.
Initially he looked into what could be causing the migraines worrying that he might have a brain tumour, but MRI scans thankfully showed that this was not the case. It was through luck and circumstance he stumbled upon cannabis as a medicine for his condition.
Mike was out playing golf in the hot sun and he became dehydrated. He felt the first symptoms of the headache begin so he paused for a rest under a tree and smoked some cannabis.
Instantly, he felt the pain begin to recede and he knew he had found a solution to his condition. He also wanted to point out that he was able to finish his round of golf and win. He came to the realisation that dehydration and hot sun were his major triggers.
Using cannabis would also mean that when a migraine did come it would last for a much shorter period of time and there was none of the post attack brain fog.
“I cannot recommend medical cannabis highly enough as treatment for migraine,” says Mike.
“It addresses all of the symptoms of the loss of vision, nausea and deep pain by addressing the inflammation in the blood vessels of the brain.”
Dr Ordman adds: “Integro Medical Clinics always recommend remaining under the care and treatment of your GP and specialist for your condition, while using cannabis-based medicines, and the Integro clinical team would always prefer to work in collaboration with them.”
If you would like further information, or to make an appointment for a medical consultation, please contact us at Integro Clinics:
Further help and support can be found at the following patient charities:
Study: Is CBD the future of chronic bladder pain treatment?
A first-of-its-kind study using human donors is examining the potential of CBD for treating chronic bladder pain. Cannabis Health speaks to the scientist leading the research.
Chronic pain is an oppressive human health problem that affects millions worldwide. In 2011 alone, the direct and indirect costs of chronic pain were at $600 billion dollars in the USA. This outweighs the costs related to heart disease, cancer, and diabetes combined.
Among these patients are the nearly eight million women and four million men suffering from interstitial cystitis (IC), commonly referred to as chronic bladder pain.
The symptoms of this chronic disease include pelvic pain and urinary storage dysfunctions, which can severely impact quality of life.
There are currently no adequate treatments for people with chronic bladder pain and scientists say new therapeutic approaches are desperately needed to not only prevent pain but also address co-morbidities such as social isolation, depression and anxiety.
A growing body of evidence suggests that cannabinoids could be the answer for treating chronic pain and inflammation. And as the research effort increases, the formulation of novel cannabinoid formulations progresses alongside it.
One of these formulations, developed by Desert Harvest Inc., packages cannabidiol with aloe vera to increase the bioavailability of CBD by 25 per cent.
As with most areas of CBD research, evidence regarding its efficacy is limited, however, a new collaborative study between Desert Harvest and the McGill University Research Centre for Cannabis in Montreal hopes to change this.
The two-phase study aims to validate whether the CBD and aloe vera formulation could alleviate the pain symptoms in a preclinical model of IC.
Dr. Reza Sharif-Naeini who leads the study said: “For the past 20 years or so, there hasn’t really been any development of new therapeutic drugs for patients with chronic pain.
“By partnering with industry colleagues, we’re trying to accelerate the speed to market for these analgesics so that the patients can benefit from them.
The first phase of the study involved a rodent model in which mice were administered a compound that metabolises acrolein in the liver.
The compound then accumulated in the bladder causing tissue damage. The symptoms are similar to human IC, including bladder inflammation, pain and bladder overactivity.
Initial data from the study are encouraging. The researchers demonstrated treatment with the cannabidiol-aloe vera formulation significantly reduced pain symptoms.
“Although we only tested it for seven days, it was enough for us to see a significant reduction in bladder pain experienced by these animals,” Dr Sharif Naeini said.
“It is a very important and exciting discovery.
“The next step for us is to start testing these compounds on human pain neurons to determine whether the effects can be translated to humans.”
The second phase of the study, expected to begin within the next month, will involve testing the effect of cannabidiol on neurons obtained from deceased human donors.
Dr Sharif-Naemi explained: “We’ve partnered with surgeons in local hospitals, so as soon as a donor dies the nervous tissue, including the pain-sensing neurons, can be harvested and kept alive in a small dish for about two weeks.
“[We] can assess the function of these pain neurons and see what happens when we apply these cannabinoid drugs to them.
“This way, we’ll be able to tell directly whether these compounds would have a beneficial effect on humans.”
The pain transmission pathway can be broken down into three steps. First are pain-sensing cells in the ‘periphery’, such as the skin or, in this case, the bladder. These nerve fibres detect the pain stimulus and transfer the information to the spinal cord.
At the spinal cord, pain transmitting neurons take information up the spine and into the brain where the third step takes place. This final step is referred to as pain interpretation.
“Cannabinoids can affect either one of these steps or all three of them together,” Dr Sharif-Naeini added.
“We think that in the periphery, cannabinoids prevent the activation of your pain-sensing neurons. This means that your nervous system doesn’t even detect the pain inflammation; it is not allowed to enter into your central nervous system.
“This is what we’re going to test in the second phase of these studies.”
Sadly, current pharmacological treatments for chronic pain, mainly opioids, are burdened with severe side effects. A rise in opioid prescription over the past decade has led to what is referred to as the opioid epidemic.
Although not a primary factor, the treatment of chronic pain is thought to be linked to this crisis.
“The absence of proper pain management is one of the contributing factors that led us to the opioid epidemic in America, so there’s really a push to develop new treatments,” Dr Sharif Naeini said.
“There are people doing opioid research to come up with better ways of eliminating the side effects of opioids, but eventually we’re going to come to a place where maybe we have gotten all that we can out of drugs, and we need new alternatives.
Dr Sharif-Naeini believes that cannabinoids could be a future alternative.
“Cannabinoids are an alternative with high potential. The more studies that are done, the more people can make informed decisions about what [medication] they take for their pain.
“Every time more research comes out it’s great because it allows us to better understand how the cannabinoid system functions.
“The hope is that we can develop better tools that will allow us to reduce pain in some of these intractable chronic pain syndromes, without necessarily affecting the patient’s functioning and cognitive capacity.”
- Provacan brings high-strength, 72% CBD to UK
- Integro Medical Clinics: How cannabis can help manage migraine pain
- Study: Is CBD the future of chronic bladder pain treatment?
- What are CBD patches and do they work?
- Is it safe to take CBD with other medication?
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