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“I feel hugely let down by the system”: Patients fall victim to UK’s cannabis supply issues

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UK medical cannabis patients report being left without medication as prescriptions are delayed

Medical cannabis patients report being left without medication, as supply issues become a “major concern” for the UK sector.

A surge in demand for cannabis medicines, combined with the increased red-tape facing importers has led to patients experiencing severe delays to their prescriptions and even running out of medication entirely. 

One patient, Sam*, said she had been without medication for 10 days after her prescription didn’t show up.

In February, the pharmacy had been unable to fulfil her regular prescription and arranged for a replacement product containing lower levels of THC.

The next month’s prescription, which was due to be delivered on 16 March, never arrived and Sam claimed that she struggled to make contact with anyone at the dispensary to find out why. When Cannabis Health spoke to her on 25 March she had still not received it, but was expecting a delivery the next day. 

“My anxiety is through the roof,” said Sam, who is prescribed cannabis for PTSD, and struggles with anxiety and depression, as well as living with symptoms of systemic lupus, fibromyalgia and chronic fatigue.

“I had managed to control it for many months with cannabis, but I need the continuity. All of the strides that I had made with my mental health have taken a backward step.” 

She continued: “I’m not sleeping any more, my nightmares are back and I’m struggling to regulate my emotions.

“All of my physical issues are getting worse again because cannabis is a big help with the inflammation. But my main concern is my mental health, physically I can be falling apart, but if my mental health isn’t right, what’s the point?”

The stress and uncertainty around what was going on with her prescription made matters worse for Sam.

“These are things I can’t control. I can’t get any communication from anyone at the clinic and I still haven’t gotten any information out of [the dispensary] whatsoever,” she said.

“I do feel hugely let down by the system. This is something that should be helping me and instead it has created huge amounts of anxiety.

“I came off antidepressants because I was able to live a normal life thanks to cannabis but I can’t imagine that the NHS would ever leave someone without mental health medicine.”

As the awareness of medical cannabis grows and demand increases, Sam believes that the current system is unable to cope and the care patients are receiving is suffering as a result.

“I don’t think that the process was fully thought through [when the law changed],” she added.

“It seems like more people are aware of cannabis medicines now and are seeking them out, but unfortunately that means my care is decreasing.

“Resolving the supply chain and ensuring that there are checks are in place to ensure that the patient isn’t being left without is hugely important.”

Brexit blockades

Hannah Deacon, co-founder of the Medical Cannabis Clinicians Society and cannabis consultancy firm Maple Tree, whose son Alfie Dingley relies on a prescription for medical cannabis, was recently faced with a similar prospect.

Hannah Deacon and son Alfie Dingley.

Following the end of the Brexit transition period, Bedrocan products from the Netherlands could no longer be legally imported into the UK, leaving dozens of patients who rely on these oils for severe epilepsy at risk of losing access to their medication.

The Dutch government confirmed it would continue to supply these medicines until July while a “long-term” solution was reached. But there is still uncertainty about what will happen after this date.

As the UK cannabis industry continues to grow, Hannah believes companies must put patients first and their needs should be at the heart of the sector.

“The creation of the cannabis sector is vitally important for many millions of patients in the UK, she said.

“However currently, the supply of products to patients is coming under extreme pressure due to many factors and sadly there’s only one victim – the patient. 

“It is imperative that the sector does all it can to put patients first and ensure supply is available when needed and patients are not left without supply. 

“We must not see the promise of products which then aren’t available as this is detrimental to the sector but mostly to the patients who rely on it.”

Home-grown cannabis

The cannabis patient advocacy group, PLEA (Patient-Led Engagement for Access) also says that supply issues have become a “major concern” for UK patients, with members of its Patient Working Group reporting similar experiences to Sam.

Advocacy director Lucy Stafford told Cannabis Health that there was an “urgent need” for changes in regulations to allow for mass importation of cannabis medicines into the country. But equally important is that products can be grown and manufactured on UK soil.

“Supply issues and delays are a major concern for medical cannabis patients,” she commented.

“Without consistent access to medication, patients can experience significant distress from the uncertainty and can quickly experience the return of debilitating symptoms, impacting health outcomes and quality of life.

“To resolve these issues, patients need access to a wide range of cannabis-based medicines on prescription. There is also an urgent need for changes in regulations to allow mass importation of cannabis-based medicines, as well as access to medications grown and processed in the UK.”

Last month it was announced that major European cannabis company EMMAC Life Sciences had partnered with Sapphire Medical Clinic to bring the first UK-manufactured EU GMP medical cannabis flower to patients. The company says it will use data collected from the clinic’S Real-World Evidence platform to inform its production and supply chain.

The UK Medical Cannabis Registry captures patient and product data and will allow EMMAC to respond to product effectiveness and increasing patient demands.

Another option

Meanwhile the digital chronic pain clinic Cellen, which has access to flower-based products, is said to be “working on solutions” with dispensaries to ensure supplies are consistent.

Clinical Associate Sarah Marten says the current issues are down to the amount of regulation importers are required to follow, which have been compounded by Brexit.

There have been a lot of issues getting products into the UK recently, caused by the amount of regulation importers are required to follow to get these medicines to patients, she told Cannabis Health.

“It’s also my understanding that some changes in the working relationships with the European manufacturers and suppliers post-Brexit has made things more difficult.

Sarah also reports that patients have reached out to Cellen after struggling to get hold of these medicines from its competitors.

“We’re hearing stories of patients being left without their supply, and many are unaware that there’s another option,” she continued.

“At Cellen we think it is important that prescribers know what products are available and are working on a number of solutions with the dispensaries to ensure access to supply is consistent.

“As with any medication if it’s helping you to control your symptoms and it’s suddenly taken away, it can have repercussions. It’s vital that we make sure patients can get consistent access to their medications and we want to help wherever we can to get people these life-changing drugs.”

The very least patients deserve

Lyphe Group, which owns Dispensary Green, the pharmacy responsible for Sam’s prescription, is now piloting a new online ordering system which it says will provide “unparalleled levels of transparency”.

The digital system will allow patients to see exactly where their medicines are, from prescription to secure delivery, as well as itemising how much of each medicine is to be taken and how frequently. 

“Patients deserve transparency and an easy pathway to receive their medication once they have their prescription. After all they have been through it is the very least they deserve,” said managing director, Jonathan Nadler. 

The company, which has managed more than 75 imports from countries across the globe admits there has been “teething issues” with the industry, but expects things to improve quickly, as it now has access to all flower-based products on the official list of cannabis medicines. 

“Since the industry in the UK began, the supply of medical cannabis to patients has been fragmented. There have been issues around every corner with producers and regulators but Lyphe are the leaders in the space, we help the most patients in the UK get to this medicine as efficiently as possible,” he said.

“We have also been the leading supplier of products on a wholesale basis to other operators in the industry where they have been unable to procure products. We are laser-focused on constantly improving our services and moving the industry forward, and won’t stop until every patient, who needs it, has access to medical cannabis.

“Moving large volumes of legal cannabis across the globe is hugely complex. However, we have now managed more than 75 imports from countries like Israel, Australia, Canada, and a few EU member states.”

Lyphe is also expanding its patient support service team, which currently has 28 members, to meet demand.

“Our team is working around the clock to help thousands of patients every month – they are the heroes who are committed to overcoming daily adversity to help our patients through the process,” said Jonathan. 

“Sometimes patients will have to wait for their medication to arrive longer than expected. This is always out of our control and usually down to regulators responsible for export, however we fully appreciate the impact this has on patients and we work quickly to overcome these instances directly with the patient.

“As product supply improves – we have stock of every flower on the formulary – which it now has, these teething issues will fade away very quickly.”

PLEA added that any patients experiencing supply issues should contact their prescribing doctor who can assist in finding a suitable alternative medication.

 

*Sam’s name has been changed to protect her identity

 

 

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Six big cannabis sector stories you might have missed this week

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It’s been another week of big news in the cannabis world.

At Cannabis Health, our in depth coverage of the ongoing growth of cannabis as a medical and wellness product continues

Meanwhile, over at Cannabis Wealth, we’ve been following all the big industry and policy news in a week which has seen some important developments..

Been busy and want to get caught up in a hurry?

Here are the six things you need to read to stay in the loop this week.

1. Reprieve for medical cannabis patients

The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.

Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year.

Medical cannabis

Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020.

Read the full story.

2. UK largest’s medical cannabis trial reports back

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.

Read more here.

3. Harrowing first-hand account of medical cannabis user
Diagnosed with a personality disorder and experiencing debilitating anxiety which left him housebound, Craig – whose name has been changed – had exhausted all treatment options and was losing all hope.
He speaks about how medical cannabis helped save his life here.

4. CBD market set to shrink

The UK’s CBD sector looks set to shrink significantly as the roll out of new regulations continues to batter the industry.

The FSA has confirmed to Cannabis Wealth it received applications for 803 different CBD products – but only 42 have been advanced to the next stage of the process so far.

More than half of all applications (445) were ‘incomplete’ and a further 41 have been withdrawn altogether.

Read the full story here.

5. CBD not linked to single doping case

CBD has not been linked to a single failed drugs test in UK sport despite fears about the undeclared levels of THC in some products.

The World Anti-Doping Agency removed the cannabinoid from its banned substances list in 2017 and since then several high profile athletes have publicly endorsed CBD products.

Even though CBD – which has no psychoactive properties – is not banned, the UK Anti-Doping (UKAD) still warns athletes to be cautious with treatments.

Read our exclusive report here.

6. School’s out for cannabis class

The first class on a pioneering university medical cannabis course have concluded their first year of studies.

The research programme at the Humboldt-Universitat zu Berlin examines the medical and nutritional uses of cannabis, production and the legal and economic frameworks of the business.

It’s the latest sign that medical cannabis is becoming a part of the mainstream education offering and a positive indication that new industry leaders will emerge in the coming years.

Full story here.

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Science finds a way for medical cannabis to relieve pain without side effects

Researchers have developed a molecule that allows THC to fight pain without the side effects.

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Medical cannabis
Many people living with chronic pain have found that cannabis can provide relief. 

Scientists may have developed a molecule which could allow medical cannabis to provide pain relief without any side effects.

Many people live with chronic pain, and in some cases, cannabis can provide relief. 

But the drug also can significantly impact memory and other cognitive functions. 

Now, researchers have developed a peptide that, in mice, allowed THC to fight pain without the side effects.

According to the US Centres for Disease Control and Prevention (CDC) around 20 percent of adults in the states experienced chronic pain in 2019. 

In some studies, medical cannabis has been helpful in relieving pain from migraines, neuropathy, cancer and other conditions, but the side effects can present hurdles for widespread therapeutic use.

Previously, researchers identified two peptides [molecules which are made up of amino acids] that disrupt an interaction between a receptor that is the target of THC and another that binds serotonin, a neurotransmitter that regulates learning, memory and other cognitive functions. 

When the researchers injected the peptides into the brains of mice, the mice had fewer memory problems caused by THC. 

Now, this team, led by Rafael Maldonado, David Andreu and colleagues, has gone one step further to improve these peptides to make them smaller, more stable, orally active and able to cross the blood-brain barrier.

Based on data from molecular dynamic simulations, the researchers designed two peptides that were less than half the length of the original ones but preserved their receptor binding and other functions. 

They also optimised the peptide sequences for improved cell entry, stability and ability to cross the blood-brain barrier. 

Then, the researchers gave the most promising peptide to mice orally, along with a THC injection, and tested the mice’s pain threshold and memory. 

Mice treated with both THC and the optimised peptide reaped the pain-relieving benefits of THC and also showed improved memory compared with mice treated with THC alone. 

Importantly, multiple treatments with the peptide did not evoke an immune response. 

Reporting in the American Chemical Society’s Journal of Medicinal Chemistry, researchers say that these findings suggest the optimised peptide is an ideal drug candidate for reducing cognitive side effects from cannabis-based pain management.

The abstract that accompanies this paper can be viewed here.

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Dutch Government to supply medical cannabis for UK patients until 2022

The Department of Health has reached an agreement to continue the supply of Bedrocan oils

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The Dutch Government will supply medical cannabis to UK patients until 2022

The Department of Health has reached an agreement with Dutch officials to extend the supply of medical cannabis oils to existing patients in the UK until 2022.

Medical cannabis patients, living with severe, life-threatening epilepsy were left without access to medication when the UK left the EU at the end of last year. 

Families, whose children are prescribed Bedrocan oils in the UK but must obtain their prescription through the Transvaal pharmacy in the Netherlands, were given two weeks notice that their medication could no longer be dispensed following the end of the Brexit transition period on 31, December 2020. 

After outrage from campaigners, the Dutch government agreed to continue supplying the life-saving products until 1 July, 2021 while a more permanent solution was reached.

This waiver period has now been extended until 1 January, 2022.

Health ministers promised to work with officials in the Netherlands to find a “long-term” solution, but according to those at the forefront of the campaign, there is still “some way to go”.

Hannah Deacon and son Alfie Dingley

Hannah Deacon’s son Alfie Dingley, who is prescribed Bedrocan products for a rare form of epilepsy, recently celebrated one year seizure-free.

In a letter to Deacon on Thursday 13 May, the DofH said it was working with the Dutch government, Bedrocan and the Transvaal pharmacy to proceed as “quickly as possible” with the UK production of these medicines.

It added that domestic production is “complex” and that manufacturing “unlicensed herbal medicines” comes with “significant challenges”. 

Deacon said that the UK production of Bedrocan products was the “only solution”.

While other cannabis-based medicines are available in the UK, experts have warned that there is ‘significant variation’ from one product to the next and switching an epilepsy patient’s treatment could be ‘life-threatening’.

“With the 1 July deadline for Bedrolite supply to cease from the Netherlands looming ever closer, we made it clear we wanted an extension to the agreement to stop the situation becoming dangerous for Alfie and the other patients receiving this vital medicine,” commented Deacon.

“The long term solution of Bedrocan products being made in the UK still has some way to go, but it can be the only solution and we thank everyone who is working very hard to achieve this. 

“This is still a long way off from being okay, but for now we have the pressure taken off on the supply issue.”

With limited access to medical cannabis on the NHS, families are still calling for the Government to help fund their children’s prescriptions, which can cost thousands of pounds each month.

Deacon added: “The ever-pressing issue of financial burden on the many families and patients wishing to use medical cannabis in the UK remains and this is a huge issue which needs dealing with.

“There are many ways in which the Government could step in and help access for very vulnerable people and we will continue working as hard as we can to make things better for all.”

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