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

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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.

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.”

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Project Twenty21 finds medical cannabis dramatically improves quality of life

The first findings from the UK’s largest medical cannabis patient study show quality of life improved by more than 50 percent. 

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Results show a 51 percent increase in patients ability to lead a more normal life

The first findings from the UK’s largest medical cannabis patient study show quality of life improved by more than 50 percent. 

Preliminary results from Drug Science’s Project Twenty21 study, have found medical cannabis significantly improves quality of life for people with life-limiting conditions such as chronic pain, multiple sclerosis (MS) Tourette’s syndrome and post-traumatic stress disorder (PTSD).

Published on Tuesday 11 May, the report is the first real-world data to be collected on medical cannabis in the UK.

Launched in 2019, Project Twenty 21 has now licensed prescriptions of medical cannabis to over 900 patients, who have been unable to manage their conditions with commonly prescribed medicines. 

Their progress has been assessed using the established methodology that is used to study the wellbeing of patients with cancer, cardiovascular disease, dementia and numerous other conditions.

Results show a 51 percent increase in patients’ self-reported health and ability to lead a more normal life, as well as significant improvements in managing debilitating secondary conditions such as anxiety, insomnia and depression.

Every patient enrolled had at least two ‘failed treatments’ on their medical records –  where commonly prescribed medications, such as opioids, had little to no effect on their ability to manage their conditions. 

Sixty four percent of patients involved in the study were male, 35 percent female and one individual identified as non binary, with an average age of 39.9 years.

The vast majority of patients (56 percent) reported chronic pain as their primary condition.

By 13 March 2021, a total of 75 individuals had completed both an initial and three-month follow up appointment, indicating the life-improving effect of prescribed medical cannabis on improved health. 

Dr Anne Katrin Schlag

Dr Anne Katrin Schlag, head of research at Drug Science

Dr Anne Schlag, head of research at Drug Science, the organisation behind the project and an honorary fellow at Imperial College London, said: Our patient population comprises a huge age range, who often have multiple health problems. The low quality of life that they experience demonstrates just how unwell many of them are.

“Stereotypes of medicinal cannabis users as being young, healthy recreational users looking for a legal source could not be further from the truth.”

Speaking to Cannabis Health she said that the treatment of patient’s secondary conditions was “essential” when considering their overall quality of life.

“The majority of patients have secondary conditions, some even as many as up to 10,” said Dr Schlag.

“Most common secondary conditions diagnosed were depression, back and neck problems, insomnia, stress and anxiety, which all can be severely detrimental to patients’ quality of life.

“With this high number of multi-morbidity, many of these patients would have been excluded from formal, randomised controlled trials, highlighting the importance of a real-world evidence database, such as Twenty21.” 

Almost two thirds (63 percent) of patients in the study had previously turned to illegal cannabis use in an attempt to treat their conditions, but have been able to avoid criminality thanks to a legal prescription. 

According to researchers, prescriptions also provide an opportunity to reduce and stop reliance on widely available medicines which can come with serious side effects, including dependency.

The report follows guidance from the National Institute for Clinical Excellence (NICE) published in April 2021, which stated, ‘there is little or no evidence that [commonly prescribed drugs, such as benzodiazepines or opioids] make any difference to people’s quality of life, pain or psychological distress, but they can cause harm, including possible addiction’.

Drug Science experts have previously called for NICE and other regulatory bodies to reconsider their guidance on medical cannabis and give patients another viable option. 

Dr Schlag told Cannabis Health that the impact of medical cannabis on opioid use would be analysed in a future report.

“In the current paper, we can see that the majority of patients are using medical cannabis to treat pain but not – yet – whether this led to opioid sparing,” she added.

Through project Project Twenty21, Drug Science is aiming to build the UK’s largest body of evidence for the effectiveness of medical cannabis, in the hope that the findings will lead to NHS funding where the benefits of treatment outweigh the potential risks.

Founder of Drug Science, Professor David Nutt, commented: “A lack of clinical evidence has made it difficult for doctors to confidently prescribe legal medical cannabis in the UK. These new findings provide a major step forward, and help to clarify the benefit these medicines can have for thousands of seriously ill patients.”

The scheme subsidises prescriptions for eligible patients to access affordable treatment through a number of UK clinics.

Eric Bystrom, CEO of Cellen, one Project Twenty21’s prescribing clinics said the findings were “significant” in furthering the understanding of medical cannabis, he added: “To date, much of the narrative in the UK has been centred around the perceived lack of data and evidence. For the first time, we now have meaningful data and research from the UK.

“This is significant because it starts to equip clinicians with data and furthers the education and understanding of medical cannabis in the UK”

What’s it like to be a patient on Project Twenty21?

My experience as a medical cannabis prescriber on Project Twenty21

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Australia lists first subsidised medical cannabis drug

Epidyolex has become the first medical cannabis product to be subsidised by the Australian Government.

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Epidyolex is the first medical cannabis product to be subsidised by the Australian Government

The epilepsy drug, Epidyolex has become the first medical cannabis product to be subsidised by the Australian Government.

Australians living with the rare form of epilepsy known as Dravet syndrome, will now have access to the cannabis-derived drug via the country’s Pharmaceutical Benefits Scheme (PBS) for the first time.

As of 1 May, 2021, Epidyolex, which contains CBD, is listed on the PBS for patients with the treatment-resistant condition, to be used in combination with at least two other anti-epileptic medicines. 

Epidyolex is only the second medicinal cannabis drug registered for supply in Australia, and the first one to be subsidised by the Government on the PBS.

Dravet syndrome is a rare, genetic epileptic encephalopathy that gives rise to seizures which don’t respond well to the standard medications.

It is estimated that around 116 patients each year will benefit from the listing of Epidyolex, who might otherwise pay more than $24,000 per year for the treatment. 

They will now pay only $41.30 per script or $6.60 if they have a concession card.

According to a report by FreshLeaf Analytics published last year, there are now around 30,000 medical cannabis patients in Australia with “record-numbers” of doctors prescribing.

But as prescriptions are not covered under the PBS, they remain costly compared to conventional medicines and out of reach for many.

In a statement announcing the listing of Epidyolex, Australian Health Minister Greg Hunt said the Government’s commitment to ensuring patients can access affordable medicines “remains rock solid”. 

 

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Experts to explore the role of medical cannabis in women’s health

A line-up of leading experts will discuss how cannabis medicines can play a vital role in women’s health.

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Many women are still unaware of female-specific health conditions such as pelvic inflammatory syndrome (PIS) or vulvodynia

Leading pain specialist, Dr Sally Ghazaleh will join a line-up of experts to discuss how cannabis medicines can play a vital role in women’s health.

The first of a four-part webinar series, taking place on Wednesday 12 May, will focus on the experience’s of women who have not felt supported by the current healthcare system – and how cannabis has helped them find relief from their conditions.

Dr Sally Ghazaleh, a pain specialist at Integro Medical Clinics, will join Sarah Higgins, clinical nurse specialist and women’s health lead at Cannabis Patient Advocacy Support Services (CPASS), alongside endometriosis patients Abby Hughes, outreach chair of PLEA (Patient-Led Engagement for Access) and Laura, author of The Endomonologues blog.

Dr Sally Ghazaleh

Dr Sally Ghazaleh is a pain management specialist

Aimed at patients, clinicians and the general public the webinar series, hosted by Cannabis Health, Integro Clinics and CPASS, aims to discuss the application of cannabis medicines in the management of complex female health conditions.

It will also highlight some of the wider issues and gender inequalities played out in the modern medical model.

Studies have shown that women’s pain is not acted on as quickly and is more likely to be dismissed than men’s, while many conditions can present differently in women than in men and therefore take longer to diagnose.

Many women are still unaware of female-specific health conditions such as pelvic inflammatory syndrome (PIS) or vulvodynia and can live with the symptoms for many years before they are correctly diagnosed and treated.

Some patients are now reporting that they have found cannabis medicines to be helpful in the management of their health conditions.

Dr Ghazaleh, a consultant at Whittington Hospital and the National Hospital of Neurology and Neurosurgery in London, joined Integro Clinics as a prescriber of medical cannabis in January. 

She specialises in managing patients with a wide range of pain conditions and has a particular interest in bladder and abdominal pain in women, and women’s health in general.

The free webinar will take place on Wednesday 12 May at 7pm.

The event is hosted by Cannabis Health, Integro Medical Clinics and CPASS, sign up for free here

If you would like further information, or to make an appointment for a medical consultation with Dr Sally Ghazaleh please contact Integro Clinics:  

Email: Contact@integroclinics.com

Twitter: @clinicsintegro

www.integroclinics.com

 

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