On a cold spring evening I catch a fast train from London to Maidstone in Kent, to meet Clark French, a young man with multiple sclerosis. I’m joining him and his companions from the United Patients Alliance (UPA) on a road tour of the UK. The group French founded last year has one, on the face of it, simple mission: the legalisation of medical cannabis in the UK.

I arrive a little early at the old Victorian building where the UPA is holding its meeting. French arrives five minutes later, smiling and leaning on a stick, and we go inside. While Alex, another activist, fires up the tea urn, French explains that he has also been firing up, discreetly, nearby. He tells me that the pain, tremors and spasms he experiences from his multiple sclerosis can be controlled with cannabis. Without it, he says, his ability to get out of bed in the mornings, let alone do things like speak at meetings, would be greatly reduced.

Although many UPA members live with painful conditions such as arthritis, multiple sclerosis and Crohn’s disease, they are campaigning hard on this single issue, eschewing the wider issue of wholesale legalisation. In his speech to the meeting, French stresses that language could help shift public perception – that “patients” should talk about “medicating” and refer to cannabis as a “medicine” rather than as a recreational “drug”. “Multiple sclerosis took so much from me,” says French. “But if prohibition wasn’t there, I could have my life back… we all deserve it. That’s my motivation.”

But it’s not that easy. Whenever French “medicates”, he has to keep an eye out for police officers. He, and other medical cannabis users, have made themselves outlaws, on one charge only.

It wasn’t always like this. British physicians prescribed cannabis for medical purposes as early as the 1840s, after Professor William O’Shaughnessy, an Irish physician, first noted its uses in India in the 1830s. The drug was included in both the British and American pharmacopeias from the 1860s onwards. But things changed. During the 1920s, moral panic about the drug increased and, ever since, the concern about so-called “reefer madness” has never fully been allayed. Cannabis was eventually outlawed for medical use when the UK Parliament passed the Misuse of Drugs Act in 1971, a decision that activists refer to as “prohibition”.

Telling the story of cannabis and the hope it may hold for sick people is not easy, not least because of the overlap with its role as a popular recreational drug. What seems, therefore, like a simple mission – to legalise its use for medical purposes – is all but that.

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Mosaic survey: Have you have ever felt concerned about your use of cannabis for medical condition(s)?

Respondent: I never felt concerned except when I was going to collect from my dealer. I’m a 64-year-old great grandmother!

There is one form of legal licensed medical cannabis in the UK: Sativex. It’s the world’s first plant-based cannabis medicine, launched by British company GW Pharmaceuticals in June 2010. Derived from extracts from Cannabis sativa, it contains nearly equal amounts of two cannabinoids: THC (delta-9-tetrahydrocannabinol) and CBD (cannabidiol). It has been licensed in the UK for treating spasticity-related symptoms in patients with multiple sclerosis if other treatments are not effective. It has been approved for use in 27 countries.

Sativex likely wouldn’t exist without Elizabeth Brice, a medical journalist who found that smoking Cannabis sativa relieved the symptoms of her multiple sclerosis far better than the first synthetic cannabinoid, nabilone, did for other patients. Inspired by activism in the USA, she set up a UK branch of Alliance for Cancer Therapeutics in 1992 and she worked with the Multiple Sclerosis Society to lobby for more research and access to cannabis-based medicine.

One of the earliest American pioneers in the medical cannabis field, Alice O’Leary-Randall, pays tribute to Brice in a Skype interview from her Florida home: “Liz gave the best years of her life to get this established. Such valiant tales should not be forgotten. I remember seeing her walk down this train platform in London. Her spasticity was getting the better of her, she had two young boys, she was juggling so many things and I was overwhelmed with her courage. Her passion was so strong.”

Brice and other activists challenged the drug’s pariah status, leading two delegations to the Department of Health and the Home Office. Crucially, Brice also lobbied the Home Office to give British pharmaceutical entrepreneur Geoffrey Guy a licence to cultivate cannabis for research purposes. He and his founding partner, Brian Whittle, named their small biotech company GW Pharmaceuticals. Guy wanted to, as he put it then, “bottle the essence of cannabis”. Today, the company continues to develop cannabis-derived products aimed at treating conditions including brain cancer, epilepsy, inflammatory bowel disease and diabetes.

Cannabis cultivation began in July 1998 and clinical trials were carried out with patients with multiple sclerosis. Patients took the cannabis-based spray orally, which meant that it would be absorbed quickly by the body and allowed patients to control their dose. Knowing how to administer cannabis, which is neither water-soluble nor injectable, had always been dogged by difficulty. So this new delivery system – which also lacked the obvious disadvantages of smoking – was key to the success of Sativex.

Brice died in 2011, a year after Sativex was licensed in the UK. But her legacy is not what it could be. The National Institute for Health and Care Excellence issued guidelines for English primary and secondary care late in 2014, saying that the price of Sativex was too high and that new NHS patients would have to pay themselves or forgo it. The Scottish Medicines Consortium can’t recommend Sativex unless a submission is made by Bayer, which holds the UK marketing rights. Only the NHS in Wales has approved the drug on prescription, for patients with multiple sclerosis who have spasms that have not responded to other medicine.

The Multiple Sclerosis Society found that 2 per cent of people with multiple sclerosis surveyed on social media were using Sativex (of whom 16 per cent said they had paid for it rather than getting it on prescription). Most patients in England will have to go without, pay for it privately or go to the black market to ease their symptoms. (British patients with other conditions that could be treated legally with cannabis abroad say that they have been turned into reluctant criminals.)

While Brice’s work nearly 20 years ago helped to kick open the door to British patients hoping to benefit from medical cannabis, it has since been slammed shut in their faces.

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Q: Is there is a specific reason that you haven’t used cannabis for your medical condition(s)?

A: I wouldn’t want to break the law or take a drug that hasn’t been approved by the medical profession. Also have two teenage children and think that bringing illegal drugs into my home would send the wrong message to them.

Sativex is just one option for medical cannabis. There are other pharmaceutical products in the pipeline. Some are based on single chemicals found in cannabis, such as cannabidiol (CBD), others include a combination. And, of course, there’s the whole cannabis plant itself.

“Cannabis is like a medicine cabinet,” says Roger Pertwee, who was instrumental in some of the early cannabis trials for multiple sclerosis. “It has a lot of compounds in it that are novel and unique to cannabis. We have discovered 104 so far, but there are others. There are many potential uses that we have to investigate.”

Pertwee is Professor of Neuropharmacology at the University of Aberdeen and also GW’s Director of Pharmacology (some of his research at the university is funded by the company). His work, alongside that of other researchers including Raphael Mechoulam and Vincenzo Di Marzo, is instrumental in our understanding of the endocannabinoid system, a network of lipids and receptors involved in a wide array of bodily processes, including appetite, memory, pain and mood.

We have two types of cannabinoid receptor: CB1, which is mostly found in the brain and spinal cord, and CB2, which is found mainly on cells in the immune system. These receptors are activated by cannabinoids made by the body (endocannabinoids) as well as synthetic cannabinoids and those present in plants.

Where should medical research focus its efforts exploring medical cannabis? Many prominent researchers, including Pertwee, believe that the individual components of cannabis are more effective than using the whole plant. Focusing on components would also obviate the need for a patient to smoke.

Areas of interest to researchers across the world include the possible therapeutic use of THC (the main psychoactive component of cannabis), CBD and other cannabinoids to treat autoimmune diseases, diabetes, cancer, inflammation, seizures and even psychiatric disorders, such as schizophrenia.

At the medical school at St George’s, University of London, Dr Wai Lui and his team have shown that cannabinoids target the signalling pathways that are mutated in cancer cells, which, effectively, tell cells to keep growing. THC and CBD can turn these signals off, which may reverse the process of cancer in the cells. The compounds also enhance the action of radiotherapy.

But Lui, too, is sceptical of a whole-plant approach. “We have an amazing chance to use a drug derived from the cannabis plant which seems to be anti-cancerous. Let’s research it, and combine it with other cancer drugs. Let’s not waste time.

“If you truly believe that anti-cancer is the argument, don’t talk about cannabis any more, in the same way that we don’t talk about white willow any more because we have aspirin… We don’t need to be hijacked by other motives, like whether or not to legalise cannabis.”

The apparently encouraging results of this kind of work have led some patients to buy cannabis oil online, which is illegal in the UK. Lui is concerned that patients could be self-medicating with oil that could be contaminated. Another problem, he says, is that other chemicals within cannabis (minor cannabinoids) could actually counteract the beneficial effects of THC and CBD. He is now asking the many medical cannabis users who email him if he can collect their data, as a potential precursor to a full clinical trial. “We need to understand the drugs being sold on the internet,” he says.

These minor cannabinoids could be helpful too. Pertwee explains: “We were looking at the history of tincture of cannabis in the past. We found it contains tetrahydrocannabivarin (THCV)”. The researchers have since found that THCV blocks the CB1 receptor but partially activates the CB2 receptor. “This might be good for treating stroke and it might be good for drug dependence,” he says. Other potential uses are being investigated, including for Parkinson’s and schizophrenia.

But it’s still early days. While some cannabis enthusiasts see it as a panacea – especially appealing when so many conditions aren’t well treated by other drugs – as yet, evidence across the board just isn’t there.

In summer 2015, a review of the efficacy of medical cannabis for a number of conditions was published. Examining 28 databases, the authors found moderate evidence that medical cannabis may help with spasticity in multiple sclerosis and with neuropathic and chronic pain. But evidence for other conditions was weaker.

One major charity, Cancer Research UK, has faced a particularly prominent backlash after voicing caution about cannabis. Its Science Communications Manager, Dr Kat Arney, showed me her bulging folder of research papers about cannabis, embellished with a sticker of Bob Marley. “Cannabinoids are really interesting molecules with potential for human health,” she says. “I read the literature regularly. Nothing tells me that cannabis is a cure for cancer.”

This cautious stance has led to the charity getting flamed on social media. Arney wants case studies to be gathered, saying that the way cannabis in its whole-plant form is discussed by the online community, uncritically, as a cure-all is unhelpful. “At the moment it sounds like – for want of a better word – snake oil, and that’s how it is marketed.”

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Q: Is there is a specific reason that you haven’t used cannabis for your medical condition(s)?

A: I do not know how to get it. If I did I would certainly give it a try as nearly all the painkillers I use make me nauseous.

Canada, Uruguay, Israel and Jamaica are among the countries that have ruled cannabis legal for medical use. Alongside these sit 23 American states and the District of Columbia, five of which, at the time of writing, have gone as far as legalising recreational use too.

But what do we mean by medical use? Steve Rolles, from the international think-tank Transform, which campaigns for the legal regulation of drugs globally, sets out some of the options: “Do we want a standardised herbal product like Bedrocan [from specially grown plants], or a tincture like Sativex, or a single-content pharmaceutical product… or a combination of products?

“Would we allow people to ‘grow their own’, as some jurisdictions do, or be provided by ‘compassion clubs’? Who would regulate this activity?”

The stated purpose of most of the American state laws is based on the Californian law: “to ensure that seriously ill Californians have the right to obtain and use marijuana for medical purposes where that medical use is deemed appropriate”. But there is conflict with federal law, under which cannabis is still illegal, and models vary widely across state lines. Alice O’Leary-Randall says this variation has scattered the movement and dubs it “medical cannabis by zip code”.

Most of these states require the patient to have some form of licence to acquire medical cannabis but not all require state residency. Although almost all states have a list of conditions that qualify for medical cannabis, these differ, with some states permitting it for chronic conditions and others only for specified illnesses such as cancer.

Data collected in some states suggests that many medical users receive cannabis for chronic or severe pain, a catch-all, rather than for the conditions on which the first activists campaigned: glaucoma, AIDS, cancer and multiple sclerosis. Certified users in Arizona, for example, are mostly young and male and use the drug for pain relief.

This, opponents argue, is evidence that medical cannabis has become a first step on the road to recreational legalisation, rather than an end in itself. Kevin Sabet, who advised the Obama administration on drug policy, now works as a consultant with Smart Approaches to Marijuana, an organisation that opposes legalisation. “In the US we are seeing that medical cannabis is being misused to legitimise recreational use,” he says.

“We know that the political movement on medical marijuana is tied to legalisation… they have rebranded cannabis, from being about 30-year-old stoners to medical use.” Successfully, too: a 2013 Fox News poll found that 85 per cent of Americans – and 80 per cent of self-identified Republicans – approve of the medical use of cannabis if prescribed by a medical doctor. But you don’t even need a doctor in some states, as homeopaths and naturopaths can issue licences.

The amount of cannabis allowed varies. Some states allow patients to grow their own. Others have restrictive medical cannabis agreements, allowing only high-CBD strains (for particular conditions such as epilepsy) – so restrictive, in fact, that patients argue that they are unworkable. The Drug Enforcement Administration has also raided cannabis dispensaries countrywide, saying that they are not just serving medical users.

“There are serious impediments to medical cannabis use within our healthcare system,” O’Leary-Randall says. “There is no consistent education of our healthcare professionals around using medical cannabis, or the endocannabinoid system.” She sits on the board of the American Cannabis Nurses’ Association, which was set up formally in 2012 to give nurses advice on how to assist patients and dispense safely, without violating federal law or their licence.

Pharmacists, too, walk a tightrope. Nearly 20 years after the legalisation of medical cannabis, the American Society of Health-System Pharmacists (an official body for the profession) encourages research into, but not distribution of, medical cannabis, so qualified pharmacists have historically been unwilling to get involved. Recent discussions by the body, however, suggest a softening of attitude towards medical cannabis. A new body, the National Association of Cannabis Pharmacy, was launched last year.

O’Leary-Randall wants more qualified pharmacists to be involved in dispensing cannabis, though she acknowledges the difficulties: “Cannabis is so unique… It’s rather daunting for elderly people to go into a dispensary and look at names like Purple Haze and Skunk Weed and pick out what is their medicine. I would love to see pharmacists more active in this so we can standardise this and get people more comfortable.”

A Dutch company called Bedrocan is changing things in Europe and further afield. The company grows six strains of cannabis with varying cannabinoid content under stringent conditions. They seal it in canisters that are then dispensed by high-street chemists, who can give advice to patients.

Bedrocan cannabis is available on prescription in Italy, Germany, Finland, the Czech Republic and the Netherlands, but is expensive in Italy (leading users to turn to the black market instead) and almost impossible to obtain in Germany. The company also exports to Canada. In theory, doctors in other EU countries, apart from the UK, can prescribe Bedrocan for patients, although this is not entirely clear (France and Ireland, too, appear to forbid import).

Dr Stephen Wright, Chief Medical Officer of GW Pharmaceuticals, points out that although Bedrocan is prescribed, it has not been formally approved as a medicine. “In the EU, Sativex is the only approved cannabis-based medicine. In some territories, herbal cannabis is available on special licence – this is not the same as being an ‘approved’ medicine.”

The benefit of the medicines approval system is, he says, that the patient, caregiver and healthcare professional can be certain that a substantial body of independently reviewed scientific evidence demonstrates the safety, efficacy and quality of the medicine.

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Q: Is there a specific reason that you haven’t used cannabis for your medical condition(s)?

A: Concerned that some of the ingredients may do more harm than good ie the psychotropics.

Meanwhile, as pockets of legalisation open across the world, UK medical bodies remain cautious about medical cannabis. Although they support the widespread research into the components of cannabis, they want the drug supplied in its active component parts on the pharmacy shelf, rather than grown in the back garden.

One reason for this is the side-effects of using the whole plant, although they are hotly debated. Research shows that driving while cannabis-impaired (hard to define, but typically taken to be for two to ten hours after use) approximately doubles the risk of a car crash. Around 10 per cent of cannabis users will develop dependence, although this is lower than for other legal drugs, such as nicotine and alcohol, with dependence rates of around 32 per cent and 15 per cent, respectively.

Another concern is around what happens if you start using cannabis at a young age, particularly in terms of cognitive impairment and psychosis, although, again, these relationships are debated.

A recent risk assessment by German and Canadian researchers concluded that a “margin of exposure” approach to drugs (the ratio of the highest level of drug possible with no ill-effects to “estimated human intake”) indicated that alcohol and tobacco should be regarded as high-risk, unlike cannabis, which was ranked as low-risk. The researchers caution, though, that these findings relate only to mortality and not other long-term effects such as psychosis.

The average level of THC in cannabis available in the UK is rising and with it is the risk of psychosis in users, although cannabis enthusiasts point out that, historically, there have always been high-THC strains available.

Dr Vivienne Nathanson from the British Medical Association (BMA) says that though the BMA believes drug use per se should be medicalised, rather than criminalised, it remains cautious: “For most people the dysphoric effects are unhelpful,” she says. “The issue here is for people with chronic or terminal illnesses that they want pain-free symptom control; they want control back over their lives. Giving them new symptoms does not help.”

The Royal Pharmaceutical Society is also wary about a medical model that gives access to the whole plant. Neal Patel, a pharmacist and its Head of Corporate Communications, explains that the society has been instrumental in bringing Sativex to the market. “We start from the perspective that we need safe, effective, high-quality medicine for patients. We are massively supportive of the licensing system in the UK… We do not want people exposed to greater harm. Does the drug work? Does it do something beyond placebo?”

Would the Royal Pharmaceutical Society support a Bedrocan-type model? “We do not believe this should be sold through pharmacies,” he says. “Pharmacies are places to come for health advice, not recreational drugs.” None of the UK high-street pharmacies I contacted, nor the supermarkets offering pharmacy services, would comment on whether they would be willing to offer medical cannabis in this form if legalised.

US drugs consultant Kevin Sabet sums it up: “I like the UK approach, with products such as Sativex and research on the components of marijuana. I don’t like medical and recreational issues being mashed together. The medical value is a different question to legalisation.

“I’m not saying there are not genuine patient advocates who want something for the condition that is ailing them. But if that is the case, get them non-smoked experimental drugs through their doctors.”

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Q: Have you ever felt concerned about your use of cannabis for medical condition(s)?

A: There is no control over the quality, no guarantee of supply and it isn’t legal.

Because so much about the use of medical cannabis in the UK is unknown, Mosaic carried out a small survey of people with long-term chronic or life-limiting conditions or impairments (you can see some of the responses as section headings throughout this piece).

In all, 178 people responded, with more than twice as many women as men. Around 40 per cent of respondents had used cannabis for medical purposes.

Of those who had used it, over half had found that it relieved pain. One-fifth said that cannabis worked better than other drugs they had used, and the same proportion said that cannabis had fewer side-effects. Twelve per cent said it allowed them to get on with everyday life, and 11 per cent said that it enabled mobility.

When asked who should have access to cannabis, a quarter of all the respondents said people in need of pain relief should; a further quarter said anyone with a medical condition that would respond to cannabis; 13 per cent wanted it limited to people with terminal and chronic conditions. Just 12 per cent were in favour of legalisation across the board.

The respondents who weren’t currently using medical cannabis gave a number of reasons for this, including concerns about the dosage and purity of cannabis and its unwanted side-effects. Nearly half of non-users expressed concern about cannabis being illegal, as did nearly three-quarters of people who had used it for medical reasons.

These fears are not unfounded. A number of United Patients Alliance members have been arrested or faced trial for cannabis-related offences. With ongoing medical conditions for which they use the drug repeatedly, they are, once identified, sitting targets for law enforcement. Some become repeat offenders, complete with a criminal record that causes problems with employment.

Billy Gartside, who was diagnosed with multiple sclerosis more than 20 years ago, spoke about his trial in May 2015. “I have been acquitted before on the grounds of medical necessity, but I am up in court again for the same offence. I think people like me and Clark [French] need to stand up; we have no choice. It’s time the raids stopped… The threat of jail is scary.” He was convicted and, at sentencing in June, received a 12-month community order and a four-month ankle tag.

Some senior police officers agree, arguing that British drug laws have failed to reduce drug use and the harms associated with it, and are long due an overhaul. Durham’s Chief Constable, Mike Barton, has called for the decriminalisation of drugs. In July 2015, Ron Hogg, former police officer and now Police and Crime Commissioner for Durham, announced a change in policy for his force. He said: “We are not prioritising people who have a small number of cannabis plants for their own use. In low-level cases we say it is better to work with them and put them in a position where they can recover.”

Tom Lloyd, the former Chief Constable of Cambridgeshire, takes a similar view. “What sense does it make to kick down the door of a person taking cannabis as the only effective treatment for their multiple sclerosis, for example, to take away their medicine, a few plants, and prosecute them?” he said, at the Home Affairs Select Committee’s high-level drugs conference in March 2015.

Medical cannabis had been left off the official agenda for the meeting, which took place in the verdant grounds of Homerton College, Cambridge. However, it kept bursting through, as opponents and proponents of reform alluded to it, with anger and passion. Supporters of the status quo argued that there were far too many speakers in favour of liberalisation. There are few in the world of drug policy, I realised that day, who can claim to be neutral voices, even when the discussion is simply about whether or not cannabis is, or is not, of medical benefit.

Professor David Nutt, one of the most famous British drug reformers, was speaking on drugs and social harm. His argument, that legal drugs such as tobacco and alcohol are as harmful as drugs such as cannabis, lost him the chairmanship of the Advisory Council on the Misuse of Drugs six years ago. In a break, Nutt said that he favours the Californian model and is already talking to specialist suppliers who could import cannabis. We discussed how politicised the drug debate is. Alluding to how cannabis was banned, he said: “This was the first time that a government had decided to take a medicine out of circulation for political reasons.” The political nature of the debates around cannabis hasn’t changed.

But politicians – and even a sceptical press – have started to hear the plea of those campaigning for access to medical cannabis. With a Conservative administration back in power in the UK, though, they have lost ground that they had made, influencing Liberal Democrat and Green politicians who will not see power any time soon.

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Q: Why do you use cannabis for your medical condition(s)?

A: Because sometimes pain is unbearable and you’ll do anything to stop it.

4/20 – otherwise known as 20 April – is the date on which cannabis enthusiasts across the globe meet up to celebrate the herb. On Sunday 19th I went down to Hyde Park in London to see the celebrations and meet up with the United Patients Alliance and other groups. A few thousand enthusiasts had gathered, despite the heavy policing. Clark French was too ill to talk, but Jonathan Liebling, the group’s Political Director, spoke in his place.

As smoke drifted low across the grass, the words of one drug policy analyst I’d spoken to came to mind. “Why do you think cannabis isn’t legalised?” the analyst asked me, rhetorically, before answering the question: “Because a bunch of stoners are trying to do it.” That stigma – that “stoners” cannot possibly achieve a change in the law – is, at long last, falling away. Change may be a long time coming, but Britain’s patient outlaws may have history on their side.

This story first appeared on Mosaic and is republished here under a Creative Commons licence.