A severely epileptic child finds succour in medical cannabis, but as her dealer faces prison her family doesn’t know where to turn. By Liam Pieper.
Should medical cannabis be legal?
In this story
Cheri O’Connell is a devout Christian. She’s an elder in her church, outside Heathcote in central Victoria, and attends Bible college twice a week. Five times a day, she doses her eight-year-old daughter, Tara, with a tincture of medical cannabis.
Tara’s parents began this treatment as a last, desperate resort after a neurologist had given their daughter less than a year to live. Tara, who was born with a debilitating and fatal form of epilepsy known as Dravet syndrome, was taking five different medications to control her seizures, comprising 18 tablets daily. She was suffering 10 grand mal seizures a day, with smaller episodes every five to 10 seconds. At her worst, she was suffering 500 seizures a day. An electroencephalograph (EEG) showed seizure activity every five seconds.
The constant epileptic seizures were shutting down Tara’s brain – her IQ was dropping. But within hours of her first dose of cannabis, Tara showed improved alertness. Within 10 days, she was seizure free.
“I’m not some pothead who wants to get high. I’m a mum whose child is sick,” Cheri says. She is adamant that medical cannabis has saved her daughter’s life. Her family made the decision to try the tincture out of desperation. “We’d heard stories within the epileptic community that gave us hope. We were nervous, but what choice did we have? Nothing else worked.”
Watching Tara now, the tincture seems to have stopped her decline, despite her grim prognosis. While physically frail and brain-damaged from her illness, Tara lets out the sudden delighted giggle of any little girl playing with her mum.
The O’Connells’ gambit seems to have paid off, and it’s one that more and more Australians are ready to take. But the supply, suddenly, is in serious question. The country’s key medicinal dealer is on the precipice of prison.
Most people come to Nimbin, once a sleepy New South Wales logging town, for one reason. They hop off the shuttle bus from Byron Bay, wander past lurid technicolour signs for shops such as Bringabong and Happy High Herbs, and score pot off the dozen or so dealers who work the high street. But if you sit on the main drag long enough you’ll spot people who stand out from the usual drug tourist. You can pick them by their gait, the way they move slowly, walking on wrecked muscles, slipped discs or arthritic joints. Some might stop and catch their breath several times, or totter on limbs wasted from cancer or AIDS. Sometimes they are healthy, beyond the drawn expression and heavy-lidded perma-weary manner of primary carers. They ignore the dealers and head up the street to the Hemp Embassy, because they’ve been told, by friends, or rumour, or even their doctor, that this is where they can score medical cannabis.
The Embassy, a beaten old weatherboard on the main street, houses a paraphernalia store and information centre. For years, it has existed as a touchstone for people who come to indulge in drug use, need legal advice or help with drug problems. According to Michael Balderstone, who runs the Embassy with a staff of volunteers, recent years have seen a rise in ordinary Australians contacting him for advice on sourcing medical cannabis.
Balderstone says that they are approached by ill people or primary carers who have read about the growing body of evidence in support of medical cannabis in America and Switzerland and who want to try it. “Sometimes they are curious. Most of the time, they are desperate. Nothing else has worked, and they’re at the end of the road,” he says. “If you look at the potential for pain relief in these natural God-given plants, it’s mind-boggling that we don’t even investigate it.”
His staff field dozens of calls every week from far-flung Australians looking for relief from chronic conditions, and they provide advice on the legality and realities of medical cannabis in Australia. Then there are the walk-ins who travel from across Australia, from as far as Broken Hill, who want help scoring. “It’s been a nightmare. There are hundreds of people who turn up wanting help and we have to turn them away, and that’s really hard. But then there are cases where you have to help, like Cheri. We put her on to Tony.”
Tony Bower runs Mullaways Medical Cannabis Pty Ltd, a federally registered company established to develop and deliver medicines derived from cannabis. The 58-year-old Aboriginal with a huge greying beard gets about in shorts and a T-shirt, and is extremely laidback for a man whose life’s work has essentially made him an outlaw.
For more than 30 years, Bower has used cannabis medicinally, after a near-fatal motorcycle accident left him with steel plates in his legs and chronic pain. He found that smoking pot gave him relief, and started growing the plant on a country property. After receiving a light sentence in a 1998 court appearance for cultivation, Bower interpreted this as tacit permission to proceed. He grew up to 49 plants, which reaped more than he could personally use, so he started giving it away to those in need.
“Basically, I started helping people, driving it up to Nimbin. After a while it was getting to be a bit of a risk and some people asked me, because I knew the plant so well, could I make a medicine, a better way for sick people to get the medical benefits than smoking it or cookies.”
Bower began selectively breeding strains of the cannabis plant and developing a technique to extract its medicinal properties while removing the psychotropic THC, a process he describes as “basically a lot of buggering around”. He claims to have developed a strain that is 97 per cent free of psychoactive chemicals. “It’s got all the medical benefits of cannabis but you can’t get stoned.” This, he says, makes it ideal for very old, young or infirm patients. As he puts it: “Not everyone likes to get the giggles.”
Mullaways’ first product, one Bower hopes to mass-produce and market, is an organic medical cannabis tincture, which is produced in an alcohol-based variety for daytime use and an oil-based variety for night-time. There is a distinct chlorophyll tinge to the liquid, which smells and tastes like freshly mowed lawn. And it works: on tired muscles, torn ligaments and old motorcycle injuries, which recede from a dull ache into a pleasant floating sensory reprieve.
Bower is convinced his tincture is a better delivery mechanism for medicinal cannabinoids – which research suggests can help relieve a wider variety of ailments – than smoking or eating the raw product. He’s concerned that people looking to use cannabis for medical reasons are harming themselves through lack of education, and sees his formula as a gentler alternative. “If you put these high amounts of THC into people’s bodies you can send them into all sorts of trauma,” he tells me. “Mate, it’d freak me out, so you can imagine what it’d be doing to sick or old people.”
At present, Bower gives away the tincture free to anyone who can prove a medical need, usually with a letter from their doctor. He makes no money, but he claims that it’s part of his cultural heritage to help those in need. Which he does; hundreds of people. All through Nimbin and the surrounding shires, I run into people who have had their life, or that of someone close to them, improved by Bower’s tinctures. One older man, with emphysema and a bad back, begins to tear up as he talks about the improvement in the quality of his life. As far north as Brisbane, as far south as Melbourne, people talk about Bower’s work, including many who have never met him.
Bower wants to supply his medicine to the world, but at present, Mullaways is mired in a legal half-existence. The tincture, which has been tested by NSW police, contains no illegal compounds and is entirely legal. But the specially grown cannabis plants from which he synthesises it are entirely illegal. In 2008 he applied for a licence to cultivate, possess and supply cannabis, from the Therapeutic Goods Administration, along with a 129-page submission of his research, samples of his product and an application fee of $1600. Nearly five years later, his application for a five-year licence is still tied up in red tape. “It’s legal,” he says. “They just won’t allow me to grow the plant, that’s all.”
It’s quite a dilemma. Last year Bower was charged with possession of about 200 cannabis plants destined for his lab. He was sentenced to 12 months’ imprisonment. He spent six weeks inside before his sentence was overturned on appeal, and replaced with a 12-month good-behaviour bond. For a while, he had enough tincture stockpiled that he didn’t need to cultivate any more of his illegal source material, but eventually his supplies ran out and a little over a week before the expiry of his parole a police helicopter spotted his crops. He was arrested with 76 plants and charged with cultivation. At the Port Macquarie court this week, Bower was granted a three-month adjournment. He plans to use the time to rally supporters and health experts to argue his actions are for the greater good.
A bigger problem is the breach of his good-behaviour bond, which will see him front the district court on a separate date. “I’m pleading guilty. I don’t have a choice,” he says. “I can’t go back on it now and deny the things I’m doing, so I’ll take the blame. It could be 12 months, two years, whatever.”
Which means, potentially, no more tincture. Bower has had to turn away hundreds of people who have approached him for help, and has restricted supply to the patients he deems most in need. And at the top of his list are sufferers of epilepsy, mostly young, including 50 or so cases of Dravet syndrome.
For the O’Connells, Tara’s improvement has been miraculous. Indeed, those in her church consider it a miracle of God.
“It’s not like we have our little girl back,” says Cheri. “It’s honestly like we’re meeting her for the first time.”
Their community has been largely behind the family’s decision, flooding the local radio switchboard with calls of support after an appearance. “People can’t believe the difference in her. She’s running, she’s talking, you can take her to a restaurant or the pool without worrying about losing her. Even people who didn’t know us personally, but had seen her around, can see the difference and come up and pass on their support.”
As a visible beneficiary of medical cannabis, Cheri, who has never smoked pot, has found herself an unlikely advocate for amendments to cannabis law in Australia. When Tony Bower was jailed for cultivation, she wrote a series of letters to politicians across Australia, agitating for his case to be reconsidered. She signed off with this plea: “Please do not allow my child or others like her to die, simply because our laws here have not caught up with the rest of the world. I cannot sit idly by and watch my child die when her death is so easily preventable.”
The response from politicians was uniform: sympathetic, but politely reaffirming that growing cannabis for any reason is illegal. Cheri was particularly disappointed by a letter from the Victorian premier’s office, which cautioned that cannabis causes mental illness and warned her off it. Tanya Plibersek, then federal minister for health, responded to a letter from the local member for Bendigo sent on the O’Connells’ behalf with: “I remain very concerned that Ms O’Connell may not be being supported by the best advice regarding treatment options available for her daughter ... there may be benefit in appraising Ms O’Connell of the Victorian government’s hospital and community palliative care services, which support patients with life-threatening conditions and their families.”
Cheri was dismayed that the health minister suggested her daughter would be better off in palliative care than in her own home, receiving treatment that seems to work. “You write to politicians who ignore your evidence and just tell you it’s illegal and to look into other options, which we already know don’t work.” It’s been intensely frustrating for the O’Connells and their supporters, as they’ve seen firsthand that cannabis contains greater medicinal potential than is generally recognised. She doesn’t understand how governments can’t demarcate between the criminal and medicinal applications of cannabis.
Dr Alex Wodak, the president of the Australian Drug Law Reform Foundation, believes the debate has been misled by wilful exaggeration of the risks of medical cannabis. “There’s pretty strong evidence it can work, yet here we are in 2014, a civilised, compassionate country, and right now if your ageing grandmother or father is riddled with cancer and in pain, if none of the medications work for them and you want them to try cannabis as a medicine, you can’t do that in Australia.”
He points to surveys that indicate 69 per cent of Australians would like cannabis to be available as a medicine. Another 75 per cent would like to see Australia do research into medical applications of the plant. “Right now we don’t do any as you can’t approach the subject rationally and look at the evidence,” Wodak says. “The fact is, despite the government’s wishes, people will experiment with marijuana as medicine. Why not make it as safe as possible? Why give these people in to a market made by Robert Trimbole and Al Capone?”
Trials have been undertaken around the world that show the efficacy of cannabis in treating chemotherapy-induced nausea and vomiting; as appetite stimulants for AIDS and cancer patients, to prevent wasting, pain and neurological disorders; and for pain and spasticity in multiple sclerosis. In Israel, nine government-sponsored sites cultivate cannabis for medical and research purposes, developing a $40-million-a-year industry. At certain Israeli nursing homes, such as the Hadarim facility outside Tel Aviv, they serve cannabis in liquid, food and pill form with lunch, and Holocaust survivors smoke the raw product to treat post-traumatic stress disorder.
In the US state of Colorado, a conservative Christian business called Stanley Brothers Social Enterprises manufactures and provides 200 epileptics with a special cannabis strain they’ve dubbed “Charlotte’s Web”. Nearly all their customers have had dramatic reductions in frequency and intensity of their seizures.
In Australia, given the ubiquity of cannabis – we smoke three times as much per capita as the world average, and 97 per cent of respondents to the 2011 Commonwealth Department of Health survey of drug users indicated that hydroponic weed was easy to obtain – medical cannabis has not really got a foothold. Australia is hampered by being a signatory to two international agreements overseen by the United Nations restricting the use of cannabis: the Single Convention on Narcotic Drugs (1961) and the Convention against Illicit Traffic in Narcotic Drugs and Psychotropic Substances (1988). These agreements require the Commonwealth to limit the cultivation, trade and use of cannabis. Any cultivation, possession or use of cannabis plants or pharmaceutical cannabis is illegal in Australia and all its states and territories.
Cannabis can be extremely dangerous, particularly to the young and those with a predisposition to psychiatric disorders, but that’s not why it’s classified as a Schedule 1 drug in the US. On August 14, 1970, the assistant secretary of health, Dr Roger O. Egeberg, reported: “Since there is still a considerable void in our knowledge of the plant and effects of the active drug contained in it, our recommendation is that marijuana be retained within Schedule 1 at least until the completion of certain studies now under way to resolve the issue.” It wasn’t scientific proof that had marijuana classified as Schedule 1, alongside LSD, MDMA and heroin, but a lack of it. Nearly 45 years later, the worldwide body of research has advanced, but our laws have not.
There are, however, slow signs of reform. In this year’s federal election a number of micro-parties campaigned on a platform of partial or total decriminalisation of cannabis, attracting almost a million votes between them. A recent NSW Legislative Council committee inquiry into the use of cannabis for medical purposes found significant evidence in favour of the plant and recommended, among other measures, “Timely evidence-based expansion of access to approved cannabis pharmacotherapies”, as well as clinical trials of pharmaceutical cannabis products with the goal of producing affordable cannabinoid products for pain management. It also called for the NSW government to introduce an amendment to the Drug Misuse and Trafficking Act 1985 so that patients with HIV/AIDS or terminal illnesses could possess up to 15 grams of raw product without risking arrest. The suggestion was considered by the O’Farrell government in 2013, and soundly rejected. Nationals MP Kevin Anderson this week met with Premier Mike Baird to seek support for a private member’s bill along these lines.
In the meantime, a significant number of people continue to use some form of cannabis to manage their illness. A national survey of Australians living with HIV found that 18 per cent reported using cannabis to relieve nausea and stimulate appetite, separate to recreational use. According to the Hemp Embassy’s Michael Balderstone, most of them suffer from incurable, chronic and debilitating illnesses. He gets occasional malingerers who fake symptoms to try to score free pot, but mostly, “these are people who have run out of options, who turn to pot as a last resort. They’re not trying to have a good time; they’re trying to alleviate real suffering.”
Despite Cheri O’Connell’s nervousness about cannabis, and in the face of medical predictions, Tara is for all intents and purposes seizure-free. She has been slowly weaned off pharmaceutical medications in conjunction with her neurologist and has experienced only one major seizure since February. The family keeps an emergency anti-seizure drug on hand, but so far they haven’t needed it – a remarkable fact given the cocktail of anti-epilepsy drugs she was previously on, most of which doctors would hesitate to prescribe adults.
“She was high as a kite for two hours after most doses,” Cheri recalls. “One of the drugs basically put her to sleep within half an hour. She had side effects that included a heart murmur, loss of IQ points. Her walking and talking was affected. It got to the point where the line was blurred between what was medication and what was disorder.”
Cheri claims another welcome aspect of Mullaways tincture is that an extra dose can be administered when a seizure is imminent. “We can see a seizure coming and prevent it. That was impossible using pharmaceutical medicine.”
She is grateful for everything the medicine has done for her family, and has stockpiled enough that they will survive for a while if Tony Bower goes back to prison, but she worries about the children who aren’t getting treatment.
“I’ve been reading about a family that’s waiting and hoping to get on this. They have a 20-month-old with Dravet syndrome who’s having 500 seizures a day. I can’t help but think, if they could get that little girl started now, how different her life will be. Tara’s IQ is now under 30 because of what her brain went through for the past seven years, before she started cannabis. If we started her at one, she might have had a normal IQ, she might never have gone through 23,000 seizures a year, in a good year. Her life would have been totally different.”
Should he go back to prison, Bower worries about the fate of his patients. “There are about 150 people in Australia with Dravet’s and I look after over a third of them, because nobody will run trials, no doctor will step in and do the work, nobody will stand up and do anything.” Each day he keeps sending out his tincture, and pushing against the red tape, because he’s certain that eventually the government will look past the hippies and the addled pot enthusiasts who agitate for law reform, and start to look at the science. “I know I’ll win. Just gotta hang in there. I know they won’t beat me. There’s no way in the world.”
For her part, Cheri is hopeful legislators will start to show some compassion for her family and those in similar straits. “I can’t even fathom how the lawmakers don’t put the personal side on it. I guess the biggest thing I want to say is, take a look at these kids, and realise that by not legalising research and allowing access to it, they’re effectively just saying these kids aren’t important enough to save. If I could meet the PM, I would like to ask him, ‘Would you let her die?’”
This article was first published in the print edition of The Saturday Paper on May 31, 2014 as "Why this young girl needs a dope dealer".
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