UK: Pot Chocolate
Source: Daily Telegraph, UK
Pub Date: Saturday, February 22 2003
Subj: UK: Pot Chocolate
Author: David Rowan
Once a week, a village postman in Pembrokeshire delivers a parcel of the "magical medicine" that has transformed Elsie Jones's life. For 10 years, as multiple sclerosis (MS) gradually conquered her nervous system, Mrs Jones felt increasingly despondent about the loss of both body and dignity - the humiliating incontinence, the uncontrolled muscle spasms, the searing pain that makes her husband Bill's nights as fitful as her own. The doctors offered little hope to 55-year-old Mrs Jones. Her illness was too advanced for her to try the drug beta-interferon, and her pain could not wait for the cannabis-based medicines currently under trial.
"She was just vegetating away, quite motionless apart from her left hand, and I would have done anything to give her a better quality of life," her 61-year-old husband explains in their specially adapted Fifties terrace house near St David's. "And then, two years ago, someone told me about those wonderful people making the medicinal chocolate. That was when everything changed."
Since then, Mrs Jones has been receiving free weekly gifts of the chocolate from a group of strangers who risk jail to help her and hundreds like her. The ingredients list, set out below the "Keep out of the reach of children" warning, explains why - besides cocoa mass, raw cane sugar, cocoa butter, lecithin and vanilla, this confection also contains a two per cent dose of raw cannabis, an active ingredient that, according to Bill Jones, has dramatically eased his wife's symptoms without getting her stoned.
"It didn't work immediately, but over a month there was a vast change," he recalls. "She's more relaxed now, can move her legs without much pain, and is even getting to sleep again."
Mrs Jones - who remains unable to talk - still demands the constant attention that caused their family butcher's business to collapse, but she hints at a smile when, twice a day, her husband of 38 years asks her to open her mouth "for choccy time". "There are a lot of good people out there," he sighs, pointing to a padded envelope with a Cumbrian postmark. "People who'll take a risk to benefit others. I don't know who they are, but I'd like to shake them by the hand - there are an awful
lot of grateful people." The depth of that gratitude is an extraordinary testimony to an underground mail-order network that refuses to wait for cannabis-based medicines to be legalised. For two years, as pharmaceutical companies have prepared to tap a market worth an estimated £250 million, thousands of cannabis-laced chocolate bars have been arriving free of charge in the homes of MS sufferers across Britain.
The 150g "cannachoc" bars, as they are known, are made in volunteers' homes, with raw materials donated by well-wishers, and supplied only to carefully vetted MS patients - 300 at the last count - of whom most, like Elsie Jones, claim their lives have improved immeasurably. Until now, the internet-based network has maintained a necessary secrecy, aware that its members risk jail for growing, possessing and supplying the drug. But faced with threats of exposure by online "vigilantes'
and aware that the political pendulum is swinging fast towards therapeutic legalisation - it agreed to allow The Telegraph Magazine to follow its work.
The group calls itself Therapeutic Help from Cannabis for Multiple Sclerosis (Thc4MS), and is nothing if not consumer-oriented. Inquirers, who must provide a doctor's note to confirm their illness, may choose milk, dark, vegan or diabetic chocolate, and are recommended to take one piece three times a day to alleviate symptoms without causing a cannabis
"high". Potheads these people are not.
Typically the "clients", as they are known, are respectable professionals, mostly in their 50s and 60s, who would have little
interest in cannabis had not they, or someone close to them, begun a desperate search for help. No payment is required, but stamps and minor donations are welcomed. And although the chocolate does not work for every sufferer, when it does the effect is deeply moving, as revealed in the letters received at the organisation's north Pennines outpost.
"Dear whoever," writes an elderly woman in Wokingham. "Thank you so much for my first supply of cannachoc. It is wonderful. For the first time in many, many months I do not have 'jerking' legs in the evenings and can sit still and watch TV!" From Essex, the scribble of a woman's unsteady hand testifies, "Since taking cannachoc, I can honestly say that the aching subsides and I can usually get to sleep. I don't feel any high-ness at all. Thank you so much." From Rhyl, "Without it my life
would be one long pain, literally. Please can I have another bar? I had six squares of the last one and then I managed to tile the bathroom."
And from Gwent, "It has taken me several years to take the plunge. I was reluctant to ask my husband to buy cannabis in a pub or street corner and risk arrest."
None is under any illusion about the crimes they and their unpaid suppliers are committing. But whatever their views about the legality of recreational cannabis, cannachoc's users share a consensus that the current law fails people with MS and other diseases who find it brings significant medical benefits.
Few of those we contacted were surprised that GW Pharmaceuticals, licensed by the Government to test cannabis-based medicines, had recently reported a series of successful trials which the company hopes will allow the NHS to offer its cannabis-based oral spray later this year. "What took them so long?" asked a young mother in Argyll. "It's not as if we haven't been telling the Government that it works." The House of Lords accepted this four years ago, when its Science and Technology Committee stressed "the need to legalise cannabis preparations for therapeutic use", until which time it urged toleration of "genuine" medicinal users. GPs, certainly, seem to share this view, judging by the number privately referring patients to the Thc4MS.org website - as are care home owners and, apparently, some police officers. As Bill Jones says, "I really don't care that it's illegal. It works for Elsie, and I made my mind up not to buy from a dealer, as you don't know what you're getting. I've told the neighbours. They just say, 'Good for you'."
Those bearing the greatest risk are volunteers like Mark and Lezley Gibson, a couple who have been making the chocolate bars from their home in a small Cumbrian town. They ask that the town's name is not specified, but that may be more to discourage desperate wheelchair-bound MS sufferers from arriving at their doorstep, as had been happening. It is not as if they are hard to find after two years making and posting the weekly chocolate packages. Legalise Cannabis Alliance stickers cover the car parked outside their terrace house and the local tourist information office directs inquirers to their front door.
They wrote to the Queen last year to explain what they do, and sought a Jubilee year amnesty for medicinal users.
Buckingham Palace replied that their letter had been passed to the Home Office. "And David Blunkett's chosen not to reply," Mark says in mock surprise. "Never mind."
"These people have been through every quack cure," says Lezley as she opens the morning's dozen or so inquiry letters in the Gibsons' kitchen.
"Eventually they've found the chocolate. Sometimes it's heartbreaking. Letters saying, "I have been leading a life of misery, I hope you'll be my light at the end of the tunnel..." Look at this old guy," she says, struggling to read one page of barely controlled scrawl. "He's been on beta-interferon but found it gives him mood swings. Yup, it can really make you evil. Now he's going to try herb as a last resort. They're so straight, some of these people, that you can see how stressed they are
when it comes to asking for cannabis. It must be awful - I know, I've been there."
Lezley, 38, had never tried cannabis until Mark, whom she met at a nightclub, suggested it might relieve her symptoms. She had become a hairdresser on leaving school in Carlisle, and was about to open her own shop at 21, when, as she put it, "my body just stopped working".
For eight months she had experienced pins and needles down her right side. One morning, sitting at an interview for a £1,000 new-business grant, she found that she could not stand up again. "I was in hospital for eight weeks, during which time the steroids doubled my weight till I resembled a small bungalow," she recalls, smiling at Mark as he sits unpacking catering-size bars of plain Dutch chocolate. "What was worse than being told I had MS was being a spakker - one minute this fashion-obsessed hairdresser, just turned 21 and full of myself, the next being prodded with needles and tickled with cotton wool. I'd never even heard of MS."
Her hospital consultant explained that within five years she would be incontinent and in a wheelchair. It is not an easy image to reconcile with the giggly, chatty woman who, 17 years later, saunters downstairs to post the latest bundle of parcels, her strawberry-pink dyed hair, diamond nose stud and black fetish-club T-shirt a jarring statement of individuality amid the prim order of this cobbled hill town. Approaching the post office, where she is greeted warmly by neighbours and the postmaster ("How many will it be today, Lezley?"), she explains that when she smoked one of Mark's joints she would notice her attacks
becoming weaker and less frequent. "I read up on the medical research into cannabis, and thought, wow, that's what I'm finding. I'd felt apprehensive about taking a drug, but apparently it was doing me the world of good." She now smokes daily; on those days when she does not, such as when she was arrested three years ago and charged with possession - her symptoms invariably re-present themselves, from the shakiness and fatigue to the twitching eyes and slurred speech.
When Lezley's case came to court, the jury acquitted her, to the judge's evident disappointment. "I explained that I wasn't doing anything wrong as it was a medicinal necessity," she says. "When you're that ill, you'd take paintstripper if you thought it would work." Mark, a 38-year-old cleaner and former food hygiene manager, is also no stranger to the courts. In 1989 he spent a week on remand in Durham prison after 1lb of cannabis was found in the boot of his car (he says it belonged to
someone else). He has also been fined over various minor charges of possession. In 2001 he stood for Parliament as the local Legalise Cannabis candidate. Although Lezley and Mark are both clear about the illegality of the cannachoc network, they argue that, since it is a cashless, altruistic project that is harming nobody, they have a moral duty to respond to pleas of desperation. "I can't look someone in the eye when they're saying help me," Lezley says, back in the kitchen, its walls plastered with "No victim - no crime" stickers and a poster of Howard Marks. "It's not the right thing to do. I didn't even have a
detention at school, but because I use cannabis I'm getting dragged into a world of crime. If someone is sick, you don't put them in jail!" Mark adds, "I can't see how anybody could have an objection to what we do. But if we were charged, we'd plead not guilty on the grounds of necessity - if we don't help these people, their health will degenerate."
He holds up 11 thick red files in which each client's preferences are stored ("prefers dark"; "diabetic") alongside their doctor's notes.
"There are plenty of quack remedies out there, with guys charging £59 an hour for something that doesn't work. Not here," Mark says with some passion. "We get nothing out of this. If the chocolate keeps one person off beta-interferon, we're saving the public health £12,000 a year." Lezley appears to have a tear in her eye. "I never wanted to be the Emily Pankhurst of the cannabis world," she says, slowly shaking her head, as their 16-year-old daughter arrives home from school. "What damage am I to anyone? I'm 5ft 1in, I can't run as this leg doesn't work. I can't even spit. If they bust me and Mark, they'd put 200 people out on the streets looking for cannabis. What's worse?"
"All we're doing is removing the monetary value of cannabis so that people who need it aren't ripped off," Mark says pensively, running his hand through his tightly cut hair to rest on his trim beard. "We want to be accepted for what we do and do it from an industrial location. I see this as a social experiment to see how people can reach out to each other."
In a modern bungalow behind a field of organic cabbages in rural Northamptonshire, Roger Newton is checking that his highly prized crop is kept at a constant 26 degrees. Within two weeks, cuttings from the five mature cannabis plants nestling in his loft will be driven off to provide the active ingredients for another hundred or so bars of chocolate. Newton does not know Mark and Lezley Gibson, nor does he ever use cannabis himself. He just decided, when he learnt about the organisation, that he "wanted to do something useful". In a sheltered corner of the loft, behind his mother-in-law's fuchsia
cuttings, he opens a door into a sauna-like pine cabin, releasing the rich, pungent aroma instantly familiar to anyone who has lately walked down Brixton Road. The five-foot-tall grove of plants, sheltering a smaller group of Newton's "babies", will provide around 400g of raw cannabis that he estimates would cost £1,500 on the streets. "To be honest, I wouldn't really know," says Newton, a 51-year-old retired former engineer and businessman. "I tried it as a youngster, but it's not for me. Ask my kids how firmly anti-drugs I was in their formative years, and they'll tell you - I told them if they ever came home with
drugs, I'd have to blow my head off."
A grandfather with two sons in their 20s and a nine-year-old daughter, Newton is no radical activist. In a West Ham T-shirt and jeans, his glasses resting on high, well-nourished jowls, he explains over a pint in the pub how he refocused his priorities when diagnosed with non-Hodgkin's lymphoma eight years ago. It was, fortunately, a treatable form of cancer, and the removal of a tumour followed by radiotherapy seems to have seen it off. But then illness hit other family members. His 34-year-old niece developed breast cancer; his mother-in-law had a brain haemorrhage. "You're here one day and gone the next," Newton reflects. "It doesn't matter how much money you've got, it's about enjoying what time you have with your family."
When the husband of an old friend with advanced MS asked if he knew where to buy cannabis, he wanted to help. "There was a shop up the road selling seeds, so I said I'd grow some in my conservatory," he says. "As she couldn't smoke it, I looked on the internet for some tips and came across Mark and Lezley's website. So now I supply them, and some of my friends get to benefit. You could say we've got a mutual arrangement."
Of the risks he admits, "You do get a bit paranoid, but it's something I've got to do, my way of giving something back. I wouldn't do it if I felt it was going to the wrong people, but I trust them. I know some who are benefiting. My fear is not that anyone will be arrested but that, until the Government takes this on board, the demand keeps rising and too many sufferers will be disappointed."
The medical benefits of cannabis have been chronicled for 2,000 years. But not until 1992, when Clare Hodges, an MS patient, wrote in The Spectator about her "very alternative medicine", did the current movement for therapeutic legalisation begin. Her neurologist put her in contact with other users and the Alliance for Cannabis Therapeutics was born. It recruited Geoffrey Guy, a retired pharmaceutical executive, to join a delegation to the Department of Health in 1997 demanding a licence to research the drug's benefits. The following day, Guy founded GW Pharmaceuticals, which now stands to make a fortune from a medically approved form of the drug.
"Mark and Lezley are absolutely remarkable and I refer people to them every day," Clare Hodges says. "They're completely self-sacrificing and do an enormous amount of work for no obvious reward. But now the drugs companies are running the show. Suddenly everyone accepts that cannabis can help people with MS, but the way things work is that the drugs companies have to make money out of it."
The MS Society, which claims to represent Britain's 85,000 sufferers, argues that only completed clinical trials - such as one backed by the Medical Research Council now starting in Plymouth - will determine whether cannabis is a safe treatment. "We do not encourage people to break the law," the society says, "though we have asked that the prosecuting authorities should treat tolerantly people who are self-medicating."
It is a position the Prime Minister appears to share. Earlier this month, Biz Ivol, the MS sufferer who founded what has become Thc4MS, was due in Kirkwall Sheriff Court, Orkney, on charges of supplying, possessing and growing the drug. When, last July, her MP asked Tony Blair if he believed the war on drugs would be won "by making a criminal of a 54-year-old woman who has led an otherwise blameless life and who is now confined to a wheelchair", he was assured that the law was being urgently reviewed.
"We understand that there is potentially a distinction between those who need cannabis for medicinal purposes and those who do not," the Prime Minister said. "I am sure that people will take a sympathetic view of the position of the honourable gentleman's constituent, although that must remain a matter for the authorities, not the Government."
Back in the "chocolate factory" - borrowed premises near their home - I watch Mark Gibson clean the £400 Auto-Therm ElectroMaster chocolate melter as Lezley breaks up 40 medium-sized bars of Dutch plain Rademaker chocolate by banging them on the table. Four hours later, the melted chocolate flowing smoothly, Mark weighs 80g of finely-ground female tops
of cannabis. "It's the finest you can get, dearer than gold," he says, before slowly sieving it and stirring it in. He lowers the temperature and leaves the mix to stand overnight before giving it another stir and pouring it into confectioners' moulds. "Before chilling it, we agitate it with our secret process," he says, his T-shirt spattered with spills.
"That puts in the bubbles, which people seem to like." As he and Lezley later foil-wrap the first of 60 bars, Mark says, "Cumbrian Police told the local paper they're 'monitoring the situation'. [The police confirm this, adding that they are fully aware of the Gibsons' work.]
"It won't do the group any good if they arrest Lezley and me, so we're about to shift production to new premises in the east of England to ensure that the supply continues. But I'll still be involved until there's a viable, legal alternative at the pharmacy, then get a bloody rest. Come on GW Pharmaceuticals, get it right."
He pauses and looks at the pile of prepared chocolate. "Actually, I hate the stuff. I've worked with chocolate for such a long time that you see so much of it you're sickened. But Lezley, now she likes chocolate." Lezley giggles. "Name me a woman who doesn't."
- Some names have been changed.