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“Three years on, disabled people need a solution”

PLEA’s advocacy director highlights how disabled patients are still suffering three years since the law change.

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Sajid Javid was Home Secretary when medical cannabis was legalised in 2018

Almost three years since the rescheduling of medical cannabis, disabled patients are still suffering, writes Lucy Stafford, advocacy director at PLEA (Patient-Led Engagement for Access).

In November 2018, current Health Secretary (and then Home Secretary) Sajid Javid ruled that medical cannabis would be made legally available for patients with chronic conditions.

At the time, he claimed the government had “now delivered on our promises.”

Today, the UK is the world’s leading producer of medical cannabis products, yet the overwhelming majority of eligible UK patients are still unable to access legal NHS prescriptions that could vastly improve their quality of life.

Instead, people suffering from chronic pain, Tourette’s disorder and other conditions have found themselves shackled with serious debt or even risking arrest as they attempt to seek treatment. Some patients report having to sell all possessions and even homes to fund private prescriptions.

Lucy Stafford medical cannabis patient

Lucy Stafford

A new report published in the British Medical Journal (BMJ) identifies barriers to access for patients with Ehlers Danlos syndrome, as well as solutions to breaking the deadlock for patients with numerous conditions.

Javid returned as Health Secretary earlier this year. Patients and patient groups now demand that he revisit his decision on medical cannabis, and quickly address all obstacles, allowing meaningful access for the people who need it.

Disabled patients across the United Kingdom are demanding that Health Secretary Sajid Javid fully delivers on the government’s 2018 promises and makes legal medical cannabis accessible to patients with chronic and life-limiting conditions. Then Home Secretary, Javid’s November 2018 decision permitted legal prescriptions of the drug. And in these three years, the United Kingdom has emerged as the largest producer of medical cannabis, identified as such in research conducted by the United Nations.

But very little has changed for the majority of patients with chronic and life-limiting conditions. Many barriers to NHS access remain. And in fact, only three patients have been able to access ‘full spectrum’ (or ‘full plant’) medical cannabis via the NHS, since the medicine was made legal.

Kayleigh Ross, a patient working group member at PLEA, said: “The government has not ‘delivered on its promises’ as Javid stated. In 2021, this important treatment remains inaccessible to hundreds, if not thousands of people whose lives could be transformed but are instead encountering huge problems as they try and afford private prescriptions. Enough waiting. We need more than just words, we need things to change.”

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BMJ Report identifies barriers to access – as well as solutions

On the 9 September 2021, the BMJ published clinical practice guidance for the provision of non-inhaled medical cannabis for patients living with moderate to chronic pain, including people with neuropathic and cancer-related pain.

This follows the publication by the BMJ in July of a new case report, highlighting the barriers which still remain for patients with chronic and life-limiting disorders, including a lack of physician knowledge on the topic and education on medical cannabis use, restrictive guidelines and cost and supply issues.

Specifically relating to Ehlers Danlos syndrome – an inherited disorder that affects the body’s tissues – the report identifies ways of breaking the deadlock for patients, with solutions that include increasing UK production of medication and bulk importation of medical cannabis from around the world.

As highlighted in the BMJ’s case report, a lack of NHS access means that UK patients using legal medical cannabis are often having to pay for expensive private prescriptions. And those that can do this will often have to borrow from friends and family, sell possessions or go into long-term debt, in order to fund their treatment.

Lara Bloom, president and CEO at The Ehlers-Danlos Society said: “We hope that this report will support clinical expertise of this treatment option and expand research into this area. It’s unacceptable that patients are forced to resort to illegal routes of access when they cannot afford private healthcare – patients need NHS access to treatment, including cannabis-based medicinal products where appropriate.”

Patients are receiving life-changing treatment, but at what cost?

Jim Finch and his wife are having to sell their family home in order to pay for an ongoing prescription that has cost upwards of thousands of pounds for just ten days worth of treatment.

Jim Finch

Jim Finch developed Tourette’s after a serious car accident

A 2018 car accident that was no fault of his own resulted in serious injuries and trauma and left Jim with complex neurological conditions including Tourette’s Syndrome, fibromyalgia and functional neurological disorder. He went from a healthy, 29-year-old dad to being unable to walk or communicate properly and suffering dozens of fits and seizures a day.

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Jim was prescribed ‘hundreds of pills’ to manage his symptoms including Tramadol, Morphine, Diazepam, Codeine, amitriptyline, Lorazepam and Sertraline, which left him (in his own words) a ‘vegetable’. Now, he uses a vape of privately prescribed medical cannabis to help control his pain, tics and seizures.

Jim said: “It has changed me from bed-bound to housebound and I can now be a proper father to my young children. Before, that simply would not have been possible. I’m as close to my old self as I have been since before the crash. There’s the injustice that people are going to prison for trying to get help for themselves.

“There’s also an injustice that people have to pay so much for private prescriptions. My partner and I sold both our cars, used all our savings and have borrowed thousands from family in the past two years. We are now having to sell my house and move in with my in-laws, along with our children to be able to continue this life-changing treatment. And all of it just so I can be present as a father.’’

Building the UK evidence base

In November 2019, the UK scientific charity Drug Science launched Project Twenty 21 – an observational study of 1,500 patients to date, which aims to create the largest body of evidence for the efficacy of medical cannabis in the UK.

The study covers a range of primary conditions, the most common being anxiety and chronic pain, and has the ultimate aim of providing enough evidence to bring about better patient access for medical cannabis on the NHS. With the help of funding from industry producers, Project Twenty21 provides patients with medical cannabis products at a capped price, whilst collecting patient data to feed the UK evidence base with the goal of influencing the NICE guidelines.

Having spent my teenage years in severe pain, dependent on opiates and a feeding tube, my quality of life has been ‘transformed’ by medical cannabis.

Now aged 21, I am one of the few patients able to legally access medical cannabis in the UK. I do this through Project Twenty 21, which provides me with a subsidised private prescription that costs £450 a month, previously having paid £1,450 each month.

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Three years ago my life was a blur of excruciating pain from dislocating joints at the smallest of movements, needing support from full-time carers to even use a bedpan as I couldn’t get out of bed safely. I had countless injections of incredibly powerful opioid drugs to try and reduce my pain. They never worked and as I became weaker, the pain medications became stronger. I felt like a shell and had no hope or idea how I could keep living in that state – that’s what constant severe pain does to you.

Three years ago Sajid Javid saw the suffering of disabled people and the benefits that medicinal cannabis could bring. Thankfully, he changed the law to allow legal prescriptions. My doctor and I were thrilled. This was my last hope for a life-changing treatment, after which I would be referred to palliative care. But when my doctor wrote me such a prescription, it was denied funding and I was told I could not access the treatment on the NHS. I was devastated.

So like millions of other unwell people, I had no option but to break the law to find help. I was scammed, sent contaminated cannabis, left in vulnerable situations during drug deals and I was terrified of being caught. This was one of the lowest points of my life.

Today, as I am fortunate enough to be supported by my family to have a legal prescription, my health has never been better or more stable. I can now walk, sit, live independently, focus, study for a degree and live a generally normal life, away from hospitals and endless medical interventions. But funding life-saving medication is unsustainable as a disabled student on a very limited income, even at the heavily subsidised rate I receive as a patient with Project Twenty21. And I live in fear of losing access and getting sick again.

The current situation helps no one. Established medications, such as those that I was given, cost the NHS a great deal and can come with terrible side effects. The toll on the mental health of ineffectively treated chronic conditions, like my own, can make patients feel suicidal. And private prescriptions are expensive so people either can’t afford them or can be forced to choose between being in pain and being able to eat.

That’s barbaric, and something the NHS was created to prevent.

For more information visit PLEA (Patient-Led Engagement for Access)

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“Millions of cannabis patients face criminalisation behind the wheel – even if completely unimpaired”

Campaign group, Seed Our Future, is calling for urgent reforms to protect patients from criminalisation on the road

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Many police officers are unaware that cannabis was legalised for medical use in 2018.

Urgent reforms are needed to driving laws to protect patients from criminalisation on the road, writes Seed Our Future founder, Guy Coxall. 

In October 2020, Seed our Future released our first report, Cannabis and the Law – No Evidence, No Crime, a report which assessed the unjust and unfounded cannabis laws in the UK via the Misuse of Drugs Act 1971 (MoDA).

The report concluded that cannabis laws are based on ideology, racism and political motivations and that the alleged harms associated with cannabis use are not based on scientific evidence but causal assumptions. It also demonstrated the urgent need for reform so as to protect our health, the environment and our economy.

The second report, developed to support the complete removal of cannabis from the MoDA 1971 via a judicial review, covers approximately 130 years of investigation into the alleged harms of cannabis and the story of prohibition to the present day. 

It is clear that the evidence of relative safety was ignored, whilst propaganda campaigns of fear and lies protected political and corporate interests, whilst millions suffered and died.

Rising numbers of driving convictions

Although the chance of being incarcerated for personal possession or cultivation of cannabis is unlikely these days – a caution, suspended sentence or community order is more likely – but these still carry a criminal record. The seemingly forgotten recent developments in driving laws are the greater threat to cannabis users in the UK, where over 10,200 people were convicted in 2019 and these numbers are increasing year on year.

Up until March 2015, cannabis users who drove a motor vehicle were provided with a fair and impartial trial as the police had to provide evidence of driving impairment in order to secure a conviction. 

I’m sure we can all agree that anyone getting behind the wheel of a vehicle whilst impaired should have the book thrown at them as they are endangering other road users. But for the majority of cannabis consumers, like those who use prescribed medicines such as opiates and benzodiazepines, are responsible enough not to drive when unfit to do so. 

Due to a low conviction rate, the police struggling to carry out field impairment tests properly and to follow other European and international countries, a review was carried out, led by Sir Peter North in 2010 to assess the implications of drug driving. A later report was published in 2013 by a so-called expert panel on drug driving. The findings of both led to an amendment to the Road Traffic Act, Section 5 (A) which essentially removed the need to prove impairment and relied entirely on blood tests showing above a per se zero tolerance level of specified schedule 1 drugs. 

The evidence used was seriously lacking and completely inconsistent as much of the data of road collisions showing THC in the system also showed presence of alcohol or other drugs and so there was little to no evidence of cannabis being a primary cause of driving impairment, in fact many trials showed that cannabis users were more careful drivers.

No evidence of impairment

Due to global changes in legislation for cannabis, a great deal of research has been carried out over the past several years to assess the implications for road safety. The new evidence shows that collisions have stayed constant, that the blood tests have no correlation with impairment and are thus inadmissible in a court as evidence of impairment, validated by the UN and that the blood tests do not provide evidence of recent use.

What does this mean? Millions of cannabis users in the UK are at risk of being criminalised and punished every time they get behind the wheel, even if they are completely unimpaired and may not have consumed cannabis for several days.

In court you will not be provided with a fair and impartial trial, as there is no evidence that you were a risk to road safety, no evidence of impairment or even that you consumed cannabis on the day of arrest. The lack of evidence and the infringement on our civil and human rights doesn’t seem to matter and at present, tens of thousands of drivers are being unfairly prosecuted every year.

The ‘medical defence’

Only those with a medical prescription are provided with a ‘medical defence’, but this does not stop the many police – who are still ignorant of the change to legislation in 2018 – dragging you through the courts and unfortunately, thousands of those with prescriptions are currently unable to meet the full criteria for the defence (something Seed Our Future are looking to rectify in the coming weeks).

What about the millions of cannabis users who use cannabis medicinally but simply can’t get access on the NHS or can’t afford a private prescription? Seed our Future have been supporting several members with this issue over the past year and have built a defence which we hope will soon set a precedent in law. It’s high time that the courts accept that to criminalise people for using essential medicine, is a clear breach of human rights and that persecuting people for not being able to access or afford a prescription is medical and financial discrimination. 

What happens now?

As more people become aware of the unique and expansive therapeutic properties of cannabis and as the roadside use of swabs (which detect only cannabis and cocaine) are increasingly used, Section 5 (A) of the Road Traffic Act has become the leading cause of criminalisation and punishment for cannabis users in the UK.

Seed our Future feels it imperative that the Department for Transport revisit the legislation, using the most recent evidence and take the recent change in legislation for medical cannabis use and the current inability of access into account in order to protect our human rights and civil freedoms. We recommend and will call for cannabis being removed from section 5 (A) of the Act and reverted to Section 4 where evidence of impairment was required.

Guy Coxall is a prominent cannabis campaigner, and the founder of Seed Our Future. To access the report and for more information visit www.seedourfuture.co.uk 

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“As a black medical cannabis patient, the sense of unfairness hurts deeply”

Maz Mills discusses the challenges facing black patients in an ‘all-white’ industry. 

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Black people are still overly stopped and searched by police

As a black medical cannabis patient, you can’t help feel a sense of hypocrisy that an all-white industry is doing what black people are persecuted for, writes Marie ‘Maz’ Mills, member of PLEA’s patient working group.

Marie Mills, black medical cannabis patient

Marie Mills is a member of PLEA

I have been a sufferer of fibromyalgia syndrome for 18 years. Recently, I was able to replace my medical cocktail of pregabalin, sertraline, amitriptyline, and propranolol with medical cannabis, having met some of the members of PLEA (Patient-Led Engagement for Access) in a Facebook group and then signing up to a private clinic in the UK.

The most notable part of my medical cannabis journey is the emotional rollercoaster of mentally getting my head around legal cannabis in the UK as a black patient.  

I am fully aware of the severe racial disparities that have clouded families of colour for as long as I can remember.  There is an even deeper association due to my Jamaican heritage, and it is undisputed that the most recognised association of cannabis lies with Rastafarianism on a global scale.  So, you can imagine my shock to find there are no black people as patients, or involved in this process or the emerging industry, and many still seem oblivious to access to legal cannabis in the UK.  

Racial divide

Why is this?  I feel as if I am sitting on a fence of racial divide. On the one side of the fence is an emerging cannabis industry that certainly could not have been started by black people, but their absence makes the industry seem as if it lacks validation.  

On the other side of the fence, black people are fully prosecuted, to the full extent of the law, more than any other race for possession of cannabis. Cannabis has been used as a weapon of destruction in the war against drugs and black people have been over persecuted for using it as medicine for as long as I have been alive.  

As a black patient you cannot help but feel a sense of hypocrisy now that an all-white industry is doing exactly what black people are persecuted for in exactly the same way. These feelings cannot be helped, they are just there, like a ball in your stomach. It haunts me every time I medicate, the sense of unfairness hurts very deeply indeed.

As a black patient this is an absolute brain fry. 

I think the deep-rooted negative association with cannabis makes it an extremely culturally sensitive issue which must be taken into consideration when dealing with black patients and their needs. 

I had no idea I would experience such a surge of emotion, involving tears, frustration, feelings of isolation, betrayal, guilt, relief, and deep confusion. I have worked in so many exciting industries and it has never occurred to me to look at things as ‘black’ and ‘white’ until legal cannabis, and it has caused a sense of trauma.  

The issues facing of people of colour

The medical cannabis industry must consider the culturally sensitive issues that will be faced by patients of colour and acknowledge the sense of trauma that legal cannabis may initiate unexpectedly.  

The racial disparities are still very present, black people are still overly stopped and searched, always asked if they have bud for sale by white people and may suffer from negative stigmas from their own culture. There are also trust issues that black people may be sold out to the police by this system. And in addition, the marketing and presentation of the industry seems like it is exclusively aimed at white people.

Culturally we are taught not to open up to white doctors on medical issues such as anxiety, depression, or mental health.  This is formed from a conditioned fear of being sectioned that is ingrained and this creates a barrier to access for people of colour.  

I am appealing for more people of colour to reach out to their doctors and to be open with them in order to reduce this cultural barrier to medical cannabis.  

People of colour may not have the noted history to qualify for the prescriptions. If the Project Twenty21 database is to reflect society’s cannabis patients to present the data for NHS access, people of colour must come forward and support this cause.

Lack of support

The industry needs to be equitable in light of the racial disparities suffered by people of colour.  There must be rehabilitation for people with cautions, warnings and convictions for possession of cannabis or who may have lost jobs for failing drugs tests for cannabis use.  They may have a range of transferable skills which could be invaluable to the industry.  A programme for patients to return to work and enter the industry is also a great initiative.

While medical cannabis has worked wonders for my day-to-day life, the toll on my mental health as a black patient and the unanticipated traumas that would arise from it is shocking.  

There is also zero support for anything I have been going through and it made me afraid to refer to more black people unless something is in development to cater to their needs.  But at the same time the relief is essential for medical users.  

Being able to identify and address the issues I’ve been facing will enable me to help both sides of the fence to work towards an equitable industry of the future.  I also look forward to a diverse database of users with all sorts of conditions in the united fight for our medication on the NHS.

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“Ireland has the most restrictive medical cannabis programme in the world”

Peter Reynolds on the issues facing the MCAP programme in Ireland

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Ireland: A doctor in a white lab coat with out stretched hands holding one cannabis leaf and another holding a bottle of oil

The HSE announced the first products available through Ireland’s medical cannabis access programme (MCAP) this week, but the system has been “sabotaged” by a medical establishment “hostile to cannabis”, argues Peter Reynolds.

Peter Reynolds is an advisory board member of Ireland Medical Cannabis Council.

Peter Reynolds is an advisory board member of the Irish Medical Cannabis Council.

Ireland has the most restrictive medicinal cannabis programme anywhere in the world and it’s still not operational more than four years after it was announced.

What’s even worse, as demonstrated by the letter, nine leading neurologists have sent to Minister for Health Stephen Donnelly, is the four products that the Health Products Regulatory Authority (HPRA) have selected are unsuitable for the conditions they are supposed to treat.

The story of how this has unfolded is a lesson in how not to regulate medicinal cannabis, or, indeed, any medicine. The programme is the result of public demand based on increasing recognition of the value and safety of cannabis when used responsibly under medical supervision. But it has been sabotaged by an Irish medical establishment that is hostile to cannabis, and officials who have refused to take expert advice, preferring the opinions of clinicians who know nothing about it.

The problems started right at the beginning with a report compiled by the HPRA early in 2017 described as from an ‘expert working group’, yet not one person in the group is an expert in cannabis. It’s not clear that any of them had any knowledge about the use of cannabis as medicine when they were appointed.

Ireland and cannabis

Unsurprisingly the report is full of errors and misunderstandings. It claims there is “an absence of scientific data” on the efficacy of cannabis and not enough information on safety. This is palpable nonsense.

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History records cannabis being used as medicine for more than 5,000 years and ironically, it was an Irishman, William Brookes Shaughnessy, who published the first scientific paper on it in the Lancet, in 1840. Since then it has been one of the most studied medicines on the planet. It has over 26,000 references on Pubmed, the foremost source for medical literature whereas paracetamol has around 12,000.

California has had a medicinal cannabis program since 1989, the Netherlands since 2001 and its use is now widespread throughout the world. Millions of people are using medicinal cannabis safely and effectively. There is a vast amount of information and evidence available.

The most glaring error in the report is the omission of pain as a condition for which cannabis should be available. Pain is the condition for which cannabis is most often used and is most effective. In 2020 the global market was valued at around $9 billion, this is expected to reach $47 billion by 2027 and over 60% of this is for treating pain. Yet the HPRA’s supposed experts thought it best to leave it out.

The HPRA started work on MCAP in March 2017. Officials claim to have sought “solutions to the supply of products from Denmark, UK, Canada and further afield”, which has included at least some officials going on international trips. It has taken four years to select four products, one of which is for epilepsy in adults and the other three are, as anyone with any expertise will confirm, best suited to treating pain!

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Responsibility for this situation lies squarely with the HPRA. It is matched by its corresponding failure to deal with many attempts to set up a medicinal cannabis industry in Ireland. At least a dozen serious proposals have been presented offering multimillion euro investments in Ireland, promising the creation of hundreds of new jobs.

Irish Cannabis industries

Professor David Finn at NUI Galway is one of the world’s leading researchers into cannabinoid medicines and even his participation has failed to galvanise the HPRA into action.

Medicinal cannabis is the fastest growing business sector in the world. It is coming to Ireland, irrespective of the negative and Luddite attitudes that prevail amongst the establishment.

What is clear is that public health, the Irish people and the Irish economy are missing out in a big way and many of the opportunities have now been lost for good.

Read more: HSE to offer first cannabis-based products on MCAP program from October

 

Peter Reynolds is president of CLEAR Cannabis Law Reform in the UK and an advisory board member of the Irish Medical Cannabis Council.

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