Advocacy
Two years on Project Twenty21 helps almost 2,000 patients access medical cannabis
David Horn, the project’s development lead, reflects on its progress so far.
Project Twenty21 has helped almost 2,000 patients access medical cannabis treatment. Two years on from its launch, the project’s development lead, David Horn, reflects on its progress so far.
Project Twenty21 (T21) was in conception long before the expression Covid-19 was even coined. Launched by Drug Science, the UK’s charity for drug reform, its initial aim was to enrol 20,000 medical cannabis patients by the end of 2021, in a bid to build Europe’s largest real-world evidence base for the safety and efficacy of medical cannabis.
But when the groundbreaking project became officially operational in August 2020 the world was well into the depths of the pandemic. The data collection, which had been anticipated to take place through face-to-face consultations and follow-up interviews between patients and their doctors – inside bricks and mortar clinics – was suddenly forced entirely online.
It’s officially 2 years since the launch of our real-world evidence medical cannabis study, #ProjectTwenty21. It’s been a challenging couple of years, but we’re proud to be approaching 2000 patients, and have just added a 5th clinic to our Directory 💪 https://t.co/a5HG9cC8Ji pic.twitter.com/NXAG0zXwAQ
— Drug Science (ISCD) (@Drug_Science) November 8, 2021
“At one stage with the emergence of Covid, we wondered whether we would have to shelve the entire effort,” admits Twenty21 project’s development lead, David Horn.
“The impact of Covid has been very interesting; we were subject to lockdowns, which necessitated a redesign of internal processes within T21.”
Twenty21 launch
Since the first patients were enrolled, there are now almost 2,000 participants, a number that is growing every month. It’s not quite the ambitious 20,000 target Drug Science was aiming for, but it’s nonetheless significant in terms of the data it is collecting on cannabis.
“20,000 patients was always a stretch target,” says David.
“We’re certainly nearer 10 per cent of that certainly than was our initial intention, but let’s not lose sight of the fact that 2,000 patients is by far and away from an order of magnitude greater than most studies and certainly significantly bigger than any other study that’s been done in cannabis.”
Dramatic first findings
The first findings from the observational study, which were published earlier this year, have indicated that medical cannabis is having a dramatic improvement in their quality of life.
David Horn, ProjectTwenty21 development lead.
By 13 March 2021, a total of 75 individuals had completed both an initial and three-month follow-up appointment. Results showed a 51 per cent 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.
Almost two thirds (63 per cent) 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.
“Our first publication has shown very strongly that patients consider cannabis to be very effective in treating their symptoms, based upon the reported levels of symptom abatement as calculated on validated data scales,” David explains.
“Suffice to say that as the numbers in the study grow and the reviews come back, we are increasingly able to make publications around what is effective in what diagnosis and to what extent.”
Twenty21 growth
Through its monthly newsletter, T21 now publishes regular data updates to give followers deeper insights into what it is learning. In August it revealed that 86 per cent of patients reported an improvement in anxiety or depression after three months of treatment – better than is typically seen with commonly prescribed antidepressants. A third of patients also report disrupted sleep or insomnia as a secondary condition.
In September it was reported that the majority of patients enrolled on the project are male (around two thirds) while the number of female patients increases steadily with age. Among those aged 18-25, only 29 per cent identify as female, while the over 75s group is made up of mainly women (64 per cent).
The data also contradicts a popular belief that young people using cannabis tend to be healthy, recreational users, as findings indicate that everyone seeking cannabis starts out with poor health, regardless of their age.
Reducing costs
As well as gathering conclusive data, through subsidising the costs of private prescriptions, T21 has allowed thousands of people to benefit from cannabis-based medicines who likely wouldn’t have been able to access the treatment otherwise.
Indications currently prescribed for include multiple sclerosis (MS), PTSD, Tourettes, substance abuse disorder (SUD) and in recent weeks it added ADHD to its list of prescribed conditions.
But by far the most common diagnoses are chronic pain (59 per cent, according to the latest data) and anxiety (almost 30 per cent).
“Both of those diagnoses significantly impact the economic activity of the patient,” says David.
“The cost of cannabis care is highly significant in relation to the numbers of people who can entertain it.”
Driving down the costs of medical cannabis is another key objective of Twenty21 and it’s one it has been successful in.
Covid has had a hand in this too. The use of telemedicine has not only meant that patients who may not have been able to travel to clinics, due to either financial or health limitations, have had the opportunity to access treatment, but it’s also reduced overall clinical costs.
As David explains: “Covid-19 drove all the clinics onto a virtual platform with only online consultations. This has the effect of driving down the amount of clinical time and the consequent cost to the patient and has resulted in clinic charges being massively reduced since the launch of T21.
“Something that we are particularly proud of is the design and establishment of £5 per gram for flower as an industry price-point that is now well established, and is relatively affordable by economically challenged patients.”
He added: “There is no doubt that the manipulation of the cost of cannabis and the cost of the clinic time that supports the prescription of cannabis has been driven down and has enabled a larger cohort of patients to access cannabis care.”
Boosting numbers
In the last six months, the project welcomed three new clinics on board and hopes to have more to announce soon. It has also ramped up its awareness, with a presence at major sector events such as Product Earth this August and Beyond the Green, the COP26 hemp fringe event in November.
The fact that the data is being collected electronically has also presented the opportunity for expansion overseas, including Germany and Australia, where negotiations are ongoing with stakeholders to launch their own versions of Twenty21.
“We are now aspiring to expand T21 offshore and through this fashion, we hope to accelerate to our goal of enrolling 20,000 patients,” David says.
“We have a particular interest in what we call ‘cannabis naive’ patients, in other words, they are new patients to cannabis, because that provides possibly the greatest insights into the response to cannabis and how that might decay or otherwise with time.
“We are interested in that information whilst it is still available in Europe, as complete deregulation has not yet occurred. Having said that, we are also potentially interested in creating a worldwide cannabis registry.”
Its overarching goal, of course, is to see cannabis-based products available to patients through the NHS. Three years since the change in legislation in November 2018, and with only three prescriptions thought to have been issued through the NHS, it seems like this is still some way off. But David is confident that soon the evidence will be impossible to ignore.
“The fact that it is only available privately underlines the fact that cannabis is still out of UK culture, and still framed as extra-mainstream,” he says.
“One of the prime objectives of Drug Science by publication is to push back against this, and our aim is to play into commissioning decisions to permit cannabis to be prescribed on the NHS.
“This will take some time to come, but the bigger that our database becomes the more irresistible our call will be.”
Twenty21 is always on the lookout for new clinics and clinicians to join the project as prescribers. If you’re interested, please email [email protected] to arrange a chat with the team.
Advocacy
10 key patient takeaways from Cannabis Europa
Everything you need to know from the UK conference this week
The UK cannabis conference, Cannabis Europa, took place this week, with a number of expert patients and prescribers taking to the stage alongside the industry professionals.
Dozens of talks and panel discussions were held over the two days from 28-29 June.
In a welcome move by the organisers, this year several panels focused specifically on voicing the patient perspective, digging deeper into the highs and lows of the sector as it stands today.
Out of all the information that was shared, we’ve broken down some of the key takeaways for current and prospective medical cannabis patients in the UK.
GP prescribing should be a priority
Professor Mike Barnes, chair of the Medical Cannabis Clinicians Society made a personal plea to the Home Secretary Priti Patel to permit GPs to prescribe cannabis, as well as doctors on the specialist register.
On the panel titled Bridging the Gap, Professor Barnes said pushing for GP prescribing should be a “number one priority” if we want to widen access in the UK. He urged Patel to make the “one-line change” to the Misuse of Drugs Act which would allow for the change in legislation.
“A dead child is not better than a child on cannabis”
World-leading paediatrician Dr Bonni Goldstein, and the UK’s own force of nature, Hannah Deacon, had the crowd around the Expo stage welling up as they spoke about the state of paediatric access to medical cannabis in this country.
Dr Goldstein, who has been exploring cannabis as a medicine in epilepsy and other long-term conditions since 2008, said she has seen a 70-80 per cent success rate in her patients, more than most pharmaceutical drugs.
She said: “What is the point of hanging onto these paradigms of pharmaceuticals when you might be able to change the quality of life and improve a child’s existence with a plant?”
She also urged doctors to “collaborate” with parents on their child’s care.
Summing up the talk with – in her own words – a “brutal” reality check, Dr Goldstein added: “A dead child is not better than a child on cannabis… this is unacceptable.”
CEO calls for decriminalisation
The CEO of Lyphe Group, which owns the UK largest prescribing clinic, The Medical Cannabis Clinics (TMCC), Jonathan Nadler, surprised many when he revealed that he wants to see the decriminalisation of cannabis in the UK.
Nadler, who was speaking on the Bridging the Gap panel, said he was in favour of decriminalisation and a “grow your own” model, if the NHS was not going to budge on access.
“I believe we need to decriminalise if the NHS aren’t going to move and cannabis isn’t rescheduled – we have to decriminalise, have a grow your own market and clubs in operation,” he said.
“That will allow patients that can’t afford cannabis to access through a grow your own market.”
The need for better training
Professor Barnes admitted that there was a need for a “proper, accredited” training course for clinicians who wish to prescribe cannabis medicines.
His comments came after Jonathan Nadler, of TMCC, promised his team had already, and continued to do so, made “improvements” to training following a “disappointing” CQC report earlier this year.
Professor Barnes said: “The patients are the experts, so the doctors have got to be compassionate and well-trained, but also trained to actually listen to the patient, because the person in front of them probably knows more about it than they do. “
The “death of all cannabis clinics”
Barnes, who is also chair of the Cannabis Industry Council, also said he would eventually like to see the catch-all cannabis clinic model we have in the UK at the moment, move towards more general condition focused practices, such as pain clinics, where cannabis is just one of a variety of treatments on offer.
“The cannabis clinic was the only way to start,” said Barnes.
“But I think, if we assume access is going to stay private, then what I’d like to see is a clinic where the doctor can look at all the possibilities, such as physiotherapy, exercise, over-the-counter medications and cannabis, just as part of their general armoury.”
He added: “We want to embrace [cannabis] as a perfectly valid, perfectly safe part of medicine. So I think in the end, going forward five or 10 years, the pure cannabis clinic will have gone or morphed into a more generic clinic.”
The double stigma of cannabis and women’s health
On a panel exploring the role of cannabis in women’s health, Dr Dani Gordon, vice chair of the Medical Cannabis Clinicians Society, spoke out about the stigma facing women who find cannabis helpful for a variety of medical conditions.
Dr Gordon highlighted how the evidence base is often “skewed” to focus on the potential harms of cannabis, rather than the benefits to a patient’s pain or overall quality of life.
She also said that while she “hadn’t been brave enough” to do so herself, in some cases continuing to prescribe cannabis during pregnancy may cause less harm than forcing a patient to return to other medications or leave the symptoms of their condition untreated.
Dr Gordon who has treated women of all ages at her clinic – her oldest patient is 89 – says the stigma is slowly being broken down. The next steps? To tackle that facing mothers and parents who use cannabis recreationally, too.
Patients are the heart of the industry…
In a powerful panel discussion, speakers Hannah Deacon, Jacqueline Poitras (MAMAKA and IACM Patient Council), Monique Ellis (Chilam) and host Mary Biles, made the strong case for patient advocacy groups to be taken seriously in the sector.
The panel highlighted the hard work and long hours of volunteers who have driven medical cannabis forward since the beginning, taking the lead on campaigning, educating and even building the evidence base.
Ellis, who is an endometriosis patient herself, commented: “I come from a technology background, where your subscriber is king. It’s exactly the same here – patients are the kings and queens of this industry.
“We need to make sure that we’re engaging with advocacy groups, and not just within the cannabis industry, we’ve got to think about cannabis naive patients that exist outside of the kind of small embryonic industry that we’re working with.”
…So pay them fairly
The panel also called for long overdue financial support from companies who wish to draw on their invaluable expertise to “make a quick buck”.
“All of the information and experience that they have gathered over the years, in their thousands of hours that have been invested into this, that’s valuable information for these companies,” said Poitras.
Deacon added: “I don’t think cannabis businesses should treat this business model any differently to any other service industry… Who’s your stakeholder? It’s your patient and your doctor. That’s how you make money. You understand what your patient wants, you understand how you can connect with doctors, and you put money behind that.”
A small contribution of just £200 a month would allow Medcan Support, which provides support to dozens of families looking to try medical cannabis for their child, to employ a full-time member of staff.
Big Narstie highlights the gulf between “black and white market” cannabis
Rapper and cannabis enthusiast, Big Narstie, addressed the elephant in the room when he spoke about the huge gap between the predominantly “white” legal medical cannabis industry and the recreational market which is a huge part of many black and ethnic diverse cultures, who use the plant for medicinal, spiritual and wellness purposes.
He also expressed his ambitions to open a Rick Simpson clinic in the future, treating patients and running courses on how to use Rick Simpson Oil safely.
Fair Trials launch global justice project
Representatives from NGO Fair Trials and the Last Prisoner Project finished the conference with the announcement of a new global justice project which aims to secure relief for those in prison for cannabis-related convictions.
Through collaboration with local partners in appropriate jurisdictions, the Fair Trials project will identify people in need of legal assistance, and recruit, train and match volunteer lawyers to take on their cases.
Advocacy
Fair Trials and Last Prisoner Project seek to launch global cannabis justice project
Fair Trials’ Global CEO Norman L. Reimer to discuss the project at Cannabis Europa Conference in London on June 29.
A new initiative from Fair Trials and the Last Prisoner Project aims to redress the harm caused by cannabis prohibition and to secure relief for those in prison for cannabis-related convictions.
The criminal justice reform NGO, Fair Trials hopes that the industry will support its work in countries across the globe where cannabis laws are being liberalised. Through collaboration with local partners in appropriate jurisdictions, the Fair Trials project will identify people in need of legal assistance, and recruit, train and match volunteer lawyers to take on their cases.
Fair Trials has enlisted the help of the Last Prisoner Project, a coalition of cannabis industry leaders, executives and artists dedicated to bringing restorative justice to the cannabis sector.
More and more jurisdictions are allowing adults to use and distribute medical and recreational cannabis. But after decades of prohibition, countless people remain behind bars or continue to suffer the collateral consequences of a cannabis conviction.
“The injustice of cannabis prohibition has resulted in millions of people worldwide serving time in prison or being saddled with a cannabis conviction, which brings with it a lifetime of harmful consequences, ranging from education and employment opportunities to immigration status and parental rights,” said Fair Trials Global CEO, Norman L Reimer.
“Of course, these harmful effects of prohibition not only impact the individuals charged, but also their families and communities. And those effects have been borne disproportionately by minorities, communities of colour, and the socio-economically disadvantaged. Legalising cannabis alone does not equal justice. Together, we must address the ongoing harms of past prohibition and leave no cannabis prisoner behind.”
The project will be modelled on the US Cannabis Justice Initiative, a collaborative effort between the cannabis industry and volunteer lawyers in the United States. When Norman Reimer was the Executive Director of the National Association of Criminal Defense Lawyers (NACDL), he partnered with the Last Prisoner Project to establish the initiative.
“Key to the success of the initiative has been generous donations from legal cannabis companies and consumers nationwide,” said Last Prisoner Project Co-Founder Steve DeAngelo. “Fair Trials, with its global reach as the world’s criminal justice watchdog, is uniquely positioned to build and house the infrastructure that’s going to be needed.”
Tomorrow (29 June), Norman Reimer will address the Cannabis Europa Conference discussing the project. Mr Reimer will be part of a panel entitled ‘Leave No Cannabis Prisoner Behind,’ and will be joined on that panel by Mary Bailey, Managing Director at the Last Prisoner Project; Dr. Laura Garius, Policy Lead at Release; and Denzel Uba, an individual impacted by criminal cannabis prohibition.
Advocacy
TOWIE star Amy Childs launches CBD range in honour of Jorja Foundation
The product range sees a portion of the proceeds going to the Jorja Foundation.
TOWIE star Amy Childs launched her new CBD range this week, with a star-studded event that shone a spotlight on the story of six-year-old Jorja Emerson.
Amy Childs was joined by former Love Islanders, Amy Hart and Cara Delahoyde-Massey, alongside her co-stars, Frankie Essex, Tom Skinner, Carina Lepore, Saffron Lempriere and Mark Ferris, for a heart-warming event celebrating the launch of her new CBD Infused beauty range, Jorja Botanicals.
The signature collection sees a portion of the proceeds going to the Jorja Foundation, which was set up in honour of six-year-old medical cannabis patient, Jorja Emerson.
The event saw The Only Way Is Essex star Frankie Essex, break down in tears as she heard Jorja’s story. Frankie, who gave birth to twins four weeks ago, wiped her eyes when Robin Emerson, Jorja’s father, showed videos of the life-threatening seizures his daughter was suffering before they discovered medical cannabis.
Love Island star, Amy Hart has since taken to Instagram to spread the word about the latest political campaign that sees Childs and Emerson petitioning to make medical cannabis more widely available on the NHS.
The Jorja Botanicals range was inspired by Jorja, who was diagnosed with a rare chromosome abnormality called 1q43q44 deletion, which has a side effect of life-threatening seizures. Her illness resulted in her being admitted to intensive care on two separate occasions, where Robin was told that she may not make it.
TOWIE stars joined Amy Childs for the launch of her new CBD range
To save his daughter’s life, Emerson knew that he had to dig deep and find a treatment that would not only help Jorja but ultimately go on to help others.
At the time it was still illegal to prescribe cannabis in the UK. Emerson joined the campaign to see medical cannabis legalised in the UK in November 2018, and Jorja’s was among the first children to be legally prescribed medicinal cannabis.
In 2021 he went on to create the Jorja Foundation – a charity set up to help other families and children going through the same battles that Robin had to face.
The Jorja Foundation’s core principles are to fund special needs equipment that is not funded through the health system, fund family counselling, private appointments and tests when a second opinion is needed, as well s cannabis-based treatment for children in the UK and to continue to campaign and educate for wider NHS access in the UK for cannabis-based medications.
Childs commented: “When I saw Robin & Jorja’s story on social media it broke my heart.
“As a mum, I couldn’t imagine the pain of being told to take my child home to say goodbye to them. I love that Robin has fought for Jorja & is now helping other families with the Jorja Foundation.
“I’m so happy that I can help the foundation by being the Creative Director of Jorja Botanicals. We have created some beautiful products for the whole family to enjoy. We will be donating a percentage of the proceeds to the foundation so that we can help as many families as possible. ”
Emerson added: “ This is the fruition of a lot of hard work over many months and I am extremely proud to launch what is the first family brand in this category. In the coming weeks, we will also be launching a ‘parent’ focused cosmetic range in partnership with our creative director Amy Childs and our premium line of tincture oils.”
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