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“I will fight this all the way”: Mum’s fear as son’s medical cannabis supply is cut off



Medical cannabis report: A woman and her son
Hannah Deacon has appealed to the Prime Minister to help her son Alfie

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.

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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.”

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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.

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“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.”


Spain approves first cannabis based medicine

The approval for Epidyolex was based on the results of four randomised controlled Phase III trials



Spain cannabis: A Spanish flag in the air with an old building behind it

Spain has approved the first cannabis based medicine, Epidyolex for patients with severe conditions such as epilepsy.

Epidyolex, an oral cannabis-based medicine, has been approved in Spain by the Ministry of Health after a large two-year trial. The approval for Epidyolex was based on the results of four randomised controlled Phase III trials. The clinical development of the therapy was spread over 10 different hospitals.

The trial involved over 700 participants with severe forms of epilepsy.

Until recently, there was no distinction between recreational and medicinal cannabis use in Spain which made it difficult to obtain products with higher quantities of 0.02 percent THC.

The medicine will only be available in hospital pharmacies for the treatment of seizures caused by Lennox-Gastaut Syndrome (LGS) and Dravet Syndrome (DS).

Spain and medical cannabis

Speaking at a press conference, neurologist Vicente Villanueva, head of the Refractory Epilepsy Unit of the Hospital Universtiari i Politècnic La Fe de València said the trials have found a 40 percent reduction in seizures.  “As clinicians and researchers, we are satisfied to have these new options”, 

Antonio Gil-Nagel Rein, a neurologist and director of the Epilepsy Program of the Hospital Ruber Internacional de Madrid reported: “The potential improvement of the quality of life in an area where therapeutic options are very small is good news. Access to a new drug with a novel and clinically proven mechanism of action is a reason for hope for patients and satisfaction for specialists.”

Epidyolex received approval from the European Commission in September 2019. This made it the first cannabis-based prescription medicine to receive authorisation.

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Royal Society of Medicine and Integro Clinics announce pain and cannabis medicines event

The event takes place on October 11 from 8:30 to 17:30. It will explore the potential of cannabis medicines in the field of pain medicine in the UK



Event: The Royal Society of Medicine logo in green and red on a white background

The Royal Society of Medicine has announced a collaborative event, Pain and cannabis medicines: Everything you want to know (but were too afraid to ask) in association with Integro Medical Clinics.

The event takes place on October 11 from 8:30 to 17:30. It will explore the potential of cannabis medicines in the field of pain medicine in the UK

Since the legalisation of cannabis medicines on prescription in November 2018, patients and clinicians alike have been awaiting more data or information regarding these medicines. 

The event aims to provide those attending with a comprehensive understanding of the uses of cannabis medicines and the practicalities of using them in their own practice. It will consist of presentations on the history, regulatory environment and pharmacology of cannabis medicines including the use of different cannabis-based medical preparations in treating pain and related symptoms in a wide variety of clinical fields in the context of the current UK regulatory framework. 

Event presentations

The day will feature presentations from international leaders in cannabis medicines such as Professor Raphael Mechoulam, the chemist who discovered the endocannabinoid system and THC, Dr Anthony Ordman, Leading UK Consultant in Pain Medicine and previous President of the Pain Medicine Section of the Royal Society of Medicine and Dr Arno Hazekamp PhD, who worked as Head of Research and Education at Bedrocan, the first European company to produce EU GMP grade cannabis medicines.  

If you wish to sign up, please click here.

Event speakers
Dr Anthony Ordman, Consultant in Pain Medicine

Event: A black and white headshot of Dr Anthony Ordman Founder of the highly respected Chronic Pain Clinic at London’s Royal Free Hospital, he is one of the UK’s most experienced specialists in the treatment of pain. For his contributions to Pain Medicine, Dr Ordman was awarded a Fellowship of the Royal College of Physicians in 2005, and he is the Immediate Past President of the Pain Medicine Section of the Royal Society of Medicine. Dr Ordman is also Senior Medical Consultant and Lead Clinician at Integro Medical Clinics and has a special interest in the potential benefits of cannabis medicines in pain medicine.

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Alex Fraser, Patient Access Lead at GrowPharma

Event: A black and white headshot of guest speaker Alex FraserAlex Fraser is a leading medical cannabis patient advocate. He is a patient himself having been diagnosed with Crohn’s Disease in 2010 at 19 years old. In 2014 he founded the United Patients Alliance and has since appeared on mainstream media multiple times, including on the BBC and ITV, to highlight the urgent need for access to cannabis medicines for the many patients who may benefit from them. He has taken delegations of patients to parliament to give testimony to politicians at the highest levels and organised educational events, rallies and protests calling for law change on medical cannabis. In February 2019 Alex joined Grow Pharma, one of the leading suppliers of cannabis medicines in the UK, as their patient access lead. He utilises his extensive knowledge of medical cannabis, his understanding of patient needs and his network in the industry to ensure patient voices are heard and represented. His work includes informing top-level policymakers, educating healthcare professionals and conceiving and running projects that increase general awareness and provide practical help for patients.

Professor Raphael Mechoulam, Professor of Medicinal Chemistry at the Hebrew University of Jerusalem in Israel

Event: A black and white headshot Most well-known for the total synthesis of delta-9 tetrahydrocannabinol (THC) and the discovery of the Endocannabinoid System. Since the inception of his research in the 60s, Professor Mechoulam has been nominated for over 25 academic awards, including the Heinrich Wieland Prize (2004), an Honorary doctorate from Complutense University (2006), the Israel Prize in Exact Sciences – chemistry (2000), the Israel Chemical Society Prize for excellence in research (2009) and EMET Prize in Exact Sciences – Chemistry (2012

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Dr Sally Ghazaleh, Consultant Pain Specialist

Event: A black and white headshot of a guest speakerDr Sally Ghazaleh, is a Pain Management Consultant at the Whittington Hospital, and the National Hospital of Neurology and Neurosurgery, London. She qualified from the University of Szeged Medical School, Hungary in 2000, and then completed her specialist training in the Anaesthesia and Intensive Care Medicine at Semmelweis University in 2007. She went on a fellowship at University College Hospital, London, to gain her higher degree in Pain Medicine

During her time at the pain management Centre at University College Hospital, she gained extensive experience in dealing with and managing patients with complex multiple pain problems. She is accomplished at a variety of interventional and non-interventional treatments for this specific patient group. Sally specializes in managing patients with lower back pain, neck pain, neuropathic pain, abdominal pain, cancer pain, complex regional pain syndrome, post-stroke pain and Fibromyalgia. She has a particular interest in bladder and abdominal pain in women, and women’s health in general.

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Celebrities including Drake call for a general pardon for those involved in cannabis offences.

There are over 150 signatures from rappers, artists, producers, law enforcement and more.



Celebrities: A judges gavel on a wooden table next to a green cannabis leaf

Over 150 celebrities including the rapper Drake and NBA athletes have signed an open letter to President Biden calling for a general pardon of non-violent cannabis offences.

NBA athlete Al Harrington, rapper Drake, world champion boxer Badou Jack, rapper and activist Killer Mike, NBA star John Wall along with Meek Mill and Julio Jones announced at a live-streamed event that they have co-written and signed a letter addressed to President Joe Biden. The letter requests a general pardon for ‘all persons subject to federal criminal or civil enforcement on the basis of a nonviolent marijuana offence.”

The idea for the letter to president Biden came from Weldon Angelos of the Weldon Project/ Mission Green and Academy for Justice Director Erik Luna. The Weldon Project aims to help fund social change and financial aid for those who are still serving prison time for cannabis-related offences. Angelo was an emerging musician before he was sent to prison for selling less than $1,000 worth of cannabis.  Despite it being his first offence,  Angelos went on to service 13 years of his term before eventually being released in 2016. He founded the project upon being released.

The letter includes signatures from 150 athletes, artists, law enforcement officials, academics, business leaders, producers, lawmakers, policy experts, reform advocates and other professionals.

It reads: “This resolve is witnessed today in both red and blue states, from coast to coast, as the American people call for an end to cannabis prohibition. Whatever one thinks of other drugs and other defendants, incarcerating cannabis offenders in federal prisons is a misuse of our nation’s resources and grossly hypocritical, given that a clear majority of Americans oppose cannabis prohibition and about half admit to using the drug during their lifetime.”

The live-streamed event discussed the letter to President Biden while placing an emphasis on a call for a general pardon. Speaking with Benzinga, Angelos said that the celebrities who had signed the letter had done so in support of a fellow artist, Ralo who is facing eight years for a cannabis offence. Despite several states switching to safe, regulated cannabis programs.

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“When Biden ran for president, he promised to take action and use the pardon power of the presidency to release those serving prison time for marijuana and pardon their felony convictions,” Angelos said. “At a time when dispensaries are as prevalent as liquor stores in some states, it is time for President Biden to now make good on that promise.”

In a press release, Ralo said: “I appreciate my friends and peers in the hip-hop community, such as Drake & Killer Mike, for supporting my clemency because it’s just not right that corporations are allowed to violate federal law and become millionaires while people like myself go to prison for years,”

He added: “This is hypocrisy. But I am hopeful that Joe Biden will honour his campaign promise and grant us clemency, without delay, so that we can return home to our families and communities.”

Angelos also highlighted that the long term effects for those incarcerated ‘go beyond the prison walls’ making it difficult for former prisoners to get jobs, access to affordable housing or educational loans. “They’re limited in so many ways that people don’t realize when they just want to begin again and contribute to society. Enough is enough. No one should be locked up in federal prison for marijuana.”

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