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‘Confused’ medical cannabis report ignores lack of patient access

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A Government report into the impact of the legalisation of medicinal cannabis has been criticised for ignoring some of the key issues facing patients.

The Advisory Council for the Misuse of Drugs (ACMD) has this week published its report on the impact of the rescheduling of medical cannabis in November 2018.

Following the landmark law change, the ACMD was commissioned by the Home Office in February 2019, to conduct a longer-term review of cannabis based products for medicinal use (CBPMs).

Its findings confirm what has been widely reported – that fewer than five NHS prescriptions for unlicensed medical cannabis products have been issued in the last two years, despite an increase in the number of products becoming available.

But the review has been criticised for failing to highlight the ‘significant harms’ caused to patients by this lack of affordable access.

Responding to the report, patient-led advocacy group PLEA (Patient-Led Engagement for Access) said that it was ‘disgraceful’ that the lack of access and the impact this has had on patients was not more prominent.

“We welcome the ACMD assessment of the impact of rescheduling CBPMs, including the development of a CBPM patient registry. However, two years on from the rescheduling – patients are in desperate need of NHS access,” they commented.

“Thankfully initiatives such as Project Twenty21 are building the evidence base in the interim, but remain inaccessible to patients who are unable to afford private healthcare costs.

“It is disgraceful that the significant harms caused by the lack of patient access is not further highlighted within the assessment.

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“We hope that a full review of international approaches to legislation of medical cannabis will lead to access to CBPMs for patients who urgently need them.”

The ACMD recognised that the number of patients obtaining private prescriptions has risen considerably, but its projection that between 149 and 224 have been issued throughout 2020 has been described as ‘way out’ by experts.

The actual figure is thought to be more like 2,500, according to Professor Mike Barnes, in keeping with the rise in the number of import notifications made for medical cannabis to the Medicines and Healthcare products Regulatory Agency (MHRA).

Specialist importers must notify the MHRA of their intention to import unlicensed cannabis medicines into the UK.

According to the Government’s figures the number of packs of medicines notified for importation rose significantly from 1,992 to 37,543 between March and November this year, suggesting huge demand in the private sector.

While around 800 patients a year have been prescribed one of the UK’s three licensed cannabis medicines –  Epidiolex, Nabilone and Sativex – on the NHS, Prof Barnes also pointed out that full extract, unlicensed medicines are ‘far superior’ when it comes to treating conditions such refractory epilepsy.

“Overall, the underlying assumption seems to be that as we have licensed cannabis medicines we don’t really need unlicensed ones,” he said.

“The ACDM, along with NICE and other bodies, don’t seem to realise that  full spectrum products are far superior to the available licensed medicines and that is why these are not being used.”

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The price of unlicensed cannabis products is said to be ‘high’ compared to that of licensed medicines, but the report doesn’t acknowledge that the cost is thought to have fallen by around three quarters in 2020.

“They should have recommended a thorough health economic appraisal,” added Prof Barnes. 

“It suggests that cannabis products are expensive without recognising that the cost has come down about 75% this year.

“They have failed to consider that the cost of the product needs to be offset against savings on other medicines such as anticonvulsants, anti-anxiety drugs and opioids.”

Although he agreed with the report’s recommendations that a full review of international approaches to the legislation of cannabis based medicinal products was needed and a patient registry would be ‘crucial’ for assessing the impact of these medicines.

Campaigner Hannah Deacon, whose son Alfie now has an NHS prescription for an unlicensed medical cannabis product described the report as ‘confused’ and said it failed to make clear the inconsistencies in access.

“Even though three licensed medicines are available access is still very limited,” she said.

“They can only be prescribed for a very limited number of conditions and we know that some CCGs and NHS trusts are not even allowing funding for these medicines.

Hannah continued: “The report also states that individual funding requests (IFRs) have to be made for unlicensed medicines and to get this sort of funding you must prove that the patient is unique or rare in diagnosis, this incredibly difficult to do with most patients.

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“There is however an NHS trust in Northern Ireland funding an unlicensed medication for an epileptic child, which isn’t made clear in their report.”

She added: “The report should have been carried out by someone who actually understands the cannabis sector and its market.”

Industry

New course offers expert advice on medical cannabis from doctors and patients

The Sativa Learning course includes insight from doctors and patients

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A new online course on prescribing medical cannabis will offer a detailed insight into the industry from both clinicians and patients. Cannabis Health speaks to course creator and CEO Ryan McCreanor.

Sativa Learning and the Medical Cannabis Clinicians Society (MCCS) have partnered to offer a new course on the prescribing of medical cannabis in the UK.

It will cover a comprehensive list of topics around cannabis as a medicine such as clinical evidence for medical cannabis, the practicalities of prescribing and side effects and contraindications.

The course, which will run online only, will also offer a variety of clinical and patient stories on a select list of conditions such as chronic pain, fibromyalgia, epilepsy, paediatric epilepsy, anxiety and post-traumatic stress disorder (PTSD).

Course: An advert for Always Pure Organics

Sativa Learning has already launched a successful online CBD course covering everything from the science behind the cannabinoid to UK regulations.

Ryan got the idea following his return from Canada to his hometown of Northern Ireland where he struggled to find decent quality CBD products. He started his career as a toxicology scientist before working for the Canadian government as an educator and trainer post legalisation in 2018.

“This was a way to bring a level of legitimacy to the industry by developing an accredited expert-led cannabis course,” said Ryan.

“The idea for the platform is that we want to provide education for all avenues of the cannabis industry. The CBD industry was a good place to start as I had a good level of knowledge myself so I put together a lot of the educational content myself.”

He continued: “I wanted to bring in real experts so we partnered with Professor Barnes and Hannah Deacon. All future courses will be CPD-credited. A lot of medical professionals will have to gain a certain amount of CPD points per year so they can take our course and feel comfortable that it is managed to a high started of further learning.”

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As well as Hannah Deacon and Prof Barnes, the course also includes expert panels from Dr Dani Gordon who will speak about cannabis and oncology. Other classes will include Dr Elie Okirie speaking about epilepsy and Dr Evan Lewis on paediatric epilepsy. When it comes to the syllabus, the MCCS has put together the content for the cannabis course.

Course: The two creators of the cannabis course standing next to each other looking into the camera

Sativa Learning founder, Ryan McCreanor and Professor Mike Barnes

Ryan explained that they selected the conditions they included carefully to give a broad overview of common conditions.

He said: “We picked out 10 of the most common conditions for which cannabis is prescribed. We have fibromyalgia, chronic pain, cancer pain and women’s health issues. The doctors explain how they prescribe for that condition and have a number of patients who speak on camera about their experience.”

 

Expert-led courses

When it comes to panel discussions, courses or expert lead videos, it can often feel as if patients are forgotten. Ryan highlighted that this is a key part of the course.

“Not only do we have the doctors educating on cannabis but we have a follow-up with a patient talking about their experience,” he said.

“They discuss what life was like for them before medical cannabis, what their prescription is like and how this changed things for them.

“The industry should be all about the patients so we want to make sure that their voices are heard.”

The course will be fully online, with an option to learn as you go and break and save your progress whenever you are ready.  At the end of the course, there will be an exam that will give you a presentation upon a passing grade. The exam is part of the CPD accreditation.

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Ryan added: “Some people have blasted through our CBD course in one day where they just sit down and get through it all which can take up to six hours depending on your existing level of knowledge. This course is going to be quite a bit longer but you can do it all in one day or you could do a few hours a night for six months.”

The platform will be available for anyone who wants to learn about cannabis although Ryan explained that it may be more suited towards industry professionals.

He concluded: “There are no barriers to entry. The course is going to be available for whoever wants to learn about cannabis medicine. The language we use is heavily targeted towards the medical professionals as it is aimed at that audience to teach medical professionals about the basics of prescribing.”

Access the course here

Read more: The importance of peer to peer learning in medical cannabis education

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Epilepsy

CBD-enriched cannabis oil may reduce seizures in children with West syndrome

Four of the eight children had less than half the seizures they had before the trial.

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Seizures: A black and blue x-ray of a brain on a black background

A new study on CBD-enriched cannabis oil for seizures involving eight children revealed that electroencephalogram (EEG) abnormalities improved by 20 to 80 percent.

The study on seizures, published online, examines if CBD-enriched cannabis oil used as an add-on therapy could help children with condition that causes spasms. It found that four of the eight children in the trial had less than half the seizures they had before the trial.

The researchers reviewed the experiences of eight West syndrome children who were refractory to anti-seizure medications between May 2020 and March 2021. The children were aged between sixteen to twenty-two months and each received a dose of 25:1 CBD to THC as an add-on therapy.

Seizure decrease

The participants record a mean of 63 seizures per day with the lower rate recorded as 31 and the higher amount recorded as 79.

At the follow-up appointment, two of the patients reported a 75 percent to 99 percent decrease in frequency. A further two children recorded a 50 percent decrease while one patient did not experience any changes at all.

The authors wrote: “The index of EEG (electroencephalogram) abnormalities improved between 20 per cent and 80 per cent in seven patients concurrently with the reduction in seizures.”

“Tolerability among those patients experiencing fewer seizures was good and, overall, “adverse effects were mild and transient.”

Epilepsy seizures

West syndrome is a form of epilepsy. According to Epilepsy Action UK, West syndrome happens in about one in every 2,5000 to 3000 children. This means that about 350 to 400 children will develop the syndrome each year in the UK.

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In 9 out of every 10 children, the first seizures will take place in the first year between three to eight months of age. They may happen in clusters or runs rather than singularly. The children may go on to develop learning difficulties as a result of the syndrome.

Earlier studies

A new study published this month shows that CBD transdermal gel may help to reduce seizures and improve children’s quality of life.

The study, Safety and Tolerability of Transdermal Cannabidiol Gel in Children With Developmental and Epileptic Encephalopathies, was conducted in Australia and New Zealand. It involved 40 children with Developmental And Epileptic Encephalopathies (DEE). The authors noted that the DEEs were the most severe type of epilepsy typically beginning in childhood.

The non-randomised, clinical trial involved CBD gel being applied twice a day for six and a half months on children aged three to eighteen. The gel had a CBD content of 125 to 500 mg.

The researchers found that the gel helped in response to facial impaired awareness seizures potentially reducing them to 44.5 percent. It also helped to reduce tonic-clonic seizures where the muscles violently contract by 22.5 percent. Overall, the seizures in 33 participants were reduced by 43.5 percent.

The children also recorded improvements in alertness, alongside the seizure reduction.

Read More: Study on CBD gel shows potentially positive effect seizures

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Fibromyalgia

UK Fibromyalgia announce two-part webinar about arthritis, fibromyalgia and cannabis medicines

The two-part webinar about arthritis and fibromyalgia will also feature patient’s voices

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Fibromyalgia: A stethoscope on a wooden surface surrounded by cannabis leaves

UK Fibromyalgia, Integro Clinics, Primary Care Cannabis Network, CPASS and PLEA are proud to present a collaborative two-part webinar discussing fibromyalgia, arthritis and cannabis medicines.

An estimated 1.5-2 million people are living with fibromyalgia and 10 million with arthritis in the UK. The management of the symptoms of these conditions can take a long time to diagnose correctly and can take even longer before they are effectively brought under control.

This two-part series aims to educate attendees on the experiences and lives of those living with fibromyalgia and arthritis, as well as show the benefits that cannabis medicines and CBD can have in alleviate some of the symptoms of these conditions.

Steven is one of three patients, who will be speaking at the second episode of the webinar.

He is a medical cannabis patient with fibromyalgia. He shares his story from first being diagnosed to gaining his medical cannabis prescription, and how his life has improved since then.

UK Fibromyalgia: A blue and white logo for the charity UK Fibromyalgia

Fibromyalgia: Steven’s Story

Steven first developed FSH Muscular Dystrophy in 2014 and was diagnosed in 2016, after an initially incorrect diagnosis of Brachial Neuritis. Then in 2015, he developed fibromyalgia, which restricted him to a wheelchair, when outside his home.
His FSH Muscular Dystrophy had caused him severe nerve damage leading to his arm dropping forwards at the shoulder and giving him huge pain. He was prescribed Naproxen, Amitriptyline, Pregabalin, Tramadol and Baclofen.

All had limited effects on his pain and had horrible side effects. So much so that he was taken off them leaving him with very little to treat the symptoms of his fibromyalgia.

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He said: “Fibromyalgia arrived during a very stressful period in my life, triggered by a car crash. Four months after the accident, I was admitted to the hospital having difficulties with walking and pain in my back, hips and legs. I had already exhausted all other common pain killers because of the treatment I had already received for FSH muscular dystrophy, which had started a year before.”

Having come off these medicines, Steven then had six weeks of physiotherapy, which didn’t help and caused him great pain. After this, he was not referred to any doctors or for psychological help, which he should have been as per NICE guidelines. It was at this point that he turned to medical cannabis, and in June 2019, he received his first prescription.

Steven discovered that using medical cannabis allowed him to gain back his mental and physical strength. It allowed him to sleep better and recoup.

Cannabis and Fibromyalgia

Steven said: “I got my first medical cannabis prescription in June 2019 and it was the best decision I’ve ever made to treat my illness. Over time the brain fog that I was perpetually in receded. I can compare my fibromyalgia with a volcano, that was bubbling and active – the cannabis soothed and quietened it. It allowed my stiffness and fatigue to reduce, and my body began to recover and flourish. Whole aspects of my personality that had switched off returned. Mentally and physically, I was healing, and I had the space to be me.

He added: “The consistent quality and regular supply of medical cannabis, as opposed to black-market cannabis, was vital. It allowed me to get a constant level of relief that allowed me to rebalance my vulnerable body and mind. With each month of use, symptoms would reduce or completely go and my kids all commented on the massive change in my energy levels.”

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Steven will be part of the round table panel in the second episode of the webinar and will discuss why he believes medical cannabis should be more widely accessible for patients when conventional medicines no longer help.

He explained: “I want to help raise the profile of medical cannabis as an effective form of treatment for Fibromyalgia at the same time as helping to raise awareness of the condition. Because it destroys people’s lives, it destroys families, careers, takes parents, partners, friends & loved ones away from us and locks them in a constant cycle of pain, anxiety and fatigue. It is a very destructive illness yet mostly invisible because these people are isolated at home suffering & unable to talk about it.

“This webinar is an opportunity to shed light on the topic of fibromyalgia and bring more attention to this illness and exactly how it affects people.”

 

To register for this free event please follow the links to get your tickets:
Part 1: https://www.eventbrite.co.uk/e/168090997699
Part 2: https://www.eventbrite.co.uk/e/168112536121

Dr Anthony Ordman, senior clinical adviser at Integro Medical Clinics Ltd said: “Integro Medical Clinics always recommends 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 speak to Dr Anthony Ordman please contact Integro Clinics:

Website: www.integroclinics.com
Email: Contact@integroclinics.com
Twitter: @clinicsintegro

Read more: Integro Medical Clinic on living with and managing arthritis pain

UK Fibromyalgia: A banner for collaborative content

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Cannabis Health is a journalist-led news site. Any views expressed by interviewees or commentators do not reflect our own. All content on this site is intended for educational purposes, please seek professional medical advice if you are concerned about any of the issues raised.

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