Dozens of severely epileptic children could be left without access to life-saving medicine when the Brexit transition period comes to an end.
Patients have been warned that supplies of medical cannabis from Holland, which around 40 severely epileptic children and their families are completely reliant on, will be terminated from the end of this month.
In a letter sent to all UK importers, clinics and several patient groups, the Department of Health & Social Care (DHSC) stated that prescriptions issued in the UK can no longer be lawfully dispensed in an EU Member State when the Brexit transition period draws to a close on 31 December, 2020.
According to the letter this means that dispensing Bedrocan products in the Netherlands for UK prescriptions is ‘no longer an option’ from 1 January 2021.
This means dozens of patients will be left without access to cannabis oils, which have improved the quality of life of epileptic children in recent years, dramatically reducing the number of life-threatening seizures they suffer.
Since the legalisation of medical cannabis in 2018, campaigners believe that only three children have been granted an NHS prescription.
Other families have been forced to pay privately for the Dutch medical cannabis, relying on fundraising to cover the costs, which can be as high as £2,500 per month.
Hannah Deacon, mother of Alfie Dingley, who featured at the forefront of the campaigns that led to the law change and is prescribed Bedrolite on the NHS, is one of those fearing that her son’s supply of medicine will be stopped.
“This truly is the worst Christmas present I and the other families affected could ever possibly receive,” said Hannah.
“I am fortunate to have an NHS prescription for Alfie, but now I am fearful it won’t be honoured due to this letter.”
“The letter, which we received just weeks before 1 January, only adds insult to injury for these families, who are already faced with the daily struggle of attempting to find the money to privately fund private prescriptions for their child’s epilepsy. We are all now faced with the grave possibility that our children will not be able to access the form of medical cannabis that works in the New Year.”
Hannah urged Prime Minister Boris Johnson to work with the Dutch Government to come to a solution.
She continued: “We are making a desperate plea to the UK and Dutch governments to work together to find a long-term solution to this crisis. This is not about the politics of Brexit. It’s about children’s lives being at stake. I urge Boris Johnson to step in, work with the Dutch Government and help us.”
ATTENTION please RT
Any parents/carers with loved ones using Bedrolite/Bedrocan oils please read the below post.
Some of you may be aware that the Department of Health & Social Care (DHSC) has sent a letter out to a number of stakeholders involved in medical cannabis
— Hannah Deacon – Alfies Hope (@Hanseizuremum) December 17, 2020
Joanne Griffiths, mother of 11-year-old medical cannabis patient, Ben said: “It’s been over two years of rejection to access the only medication that works for our children and now we are faced with the threat of not being able to access the medication even privately with only 13 days notice.
“We are so scared, after being in hospital over New Year, two years ago with our son, after other medication failed to help, he had up to 300 life threatening seizures a day. We can’t go back to that nightmare.”
An End Our Pain Campaign Spokesperson said: “This letter is yet another devastating blow to these families, who already experience the difficulties of caring for very sick children. Time after time, the End Our Pain families have made desperate pleas to the Prime Minister, the Health Secretary and the NHS for urgent assistance, but their needs continue to be ignored. This letter, sent so close to the transition deadline, has left us scrambling to find a solution based on very limited information.
“The termination of medical cannabis supply from the Netherlands to the UK, will be a matter of life and death for these children. It’s imperative that the Government act now to help reach a solution and help these families.”
A Department of Health and Social Care 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 dependant 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 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.
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.
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
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.
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.
Dr Anthony Ordman, Consultant in Pain Medicine
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.
Alex Fraser, Patient Access Lead at GrowPharma
Alex 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
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
Dr Sally Ghazaleh, Consultant Pain Specialist
Dr 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.
Zurich to launch recreational cannabis trial
Switzerland’s largest city announced a three and a half year pilot scheme that will allow the sale of cannabis products.
Zurich is launching a new trial that will allow people to buy cannabis products from pharmacies and social clubs under controlled conditions from next year.
Zurich, Switzerland’s largest city, announced a three and a half year pilot scheme that will allow the sale of cannabis products. Products will be available with different combinations of THC and CBD.
Local manufacturers will need a production permit which will available from the Federal Office of Public Health. This will help to ensure quality and standards.
The scheme titled the Züri Can, cannabis with responsibility will start next year and is possible thanks to a change in the law that was introduced by the Swiss parliament in 2020. The law allows cities to conduct scientific studies on the effects of the cannabis market and of recreational use.
The trial will also be supervised by Zurich University’ psychiatric hospital.
In a statement, the City of Zurich, Zurich pharmacy network and Zurich University said: “For years, the City of Zurich and the Psychiatric University Clinic in Zurich have been committed to an objective and low-risk approach to cannabis use. In mid-May 2021, changes to the Narcotics Act came into force, which allow pilot tests for regulated cannabis sales. On this legal basis, the Psychiatric University Clinic Zurich, in cooperation with the City of Zurich, wants to research models of the regulated purchase of cannabis and its effects on the health and consumption behaviour of the consumer.”
“The aim of the Zurich study is to provide relevant knowledge on the best possible use of cannabis. The study is intended to promote public health, maintain public safety and support the protection of minors.”
In a survey, one-third of the Swiss population reported using cannabis at some stage with 200,000 reporting they use it frequently.
However, an initiative to decrinmalise cannabis for personal consumption was defeated in 2008 by almost two-thirds of the vote. This marked the second time there was a national vote on the issue of cannabis.
Zurich will be the first city in Switzerland to take part in the scheme but other cities may follow such as Bern or Geneva.
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