Ray Milburn says he would give anything to work again. Instead, the 55-year-old is confined to the loungeroom of his Port Pirie home most days, suffering chronic pain after being injured in an accident at a concrete pipe factory in Victoria almost 24 years ago.
“On a good day, the pain is ‘good’, but it’s still pain,” Ray says.
For this interview, Ray is struggling. “I’m propped up on the lounge because If I move, I’ll scream,” he says. “But as long as I stay still, I’ll be alright.”
Ray has been on ordine (liquid morphine), methadone and other medication for pain relief since crushing his right foot in the accident, and then fracturing his left leg days later. Three months after, he was diagnosed with complex regional pain syndrome, a malfunction of the nervous system. It is incurable.
Suffering constant pain in his lower legs and left hand, Ray is on the highest strength ordine that doctors can prescribe: 10mg/mL. It’s still not enough.
“Sleep deprivation and pain are the two basic forms of torture,” Ray says.
“I’ve been tortured for 24 years. Not one day has been without pain. When it’s bad, it’s like putting your lower legs into two big vices and having someone turn the screws. The stabbing pain is like having a knitting needle stuck through my foot up to my knee. I often wake up screaming. It’s crazy… that’s why they call it complex.”
Ray is an advocate for medicinal cannabis for pain relief.
“I would rather throw all the big pharmacy drugs like morphine and methadone and other tablets in the bin and take a natural cannabis medicine by vaporiser or oil,” he says.
“All the medications I’ve been on are fabricated – they slowly destroy your organs. They are classed as dangerous drugs of addiction. Medicinal marijuana doesn’t do those things.”
A growing body of evidence – supported by numerous case studies in Australia and throughout the world – suggests that medicinal cannabis reduces chronic pain and has benefits for neurologic conditions like epilepsy. The issue is hotly debated, with critics pointing to a lack of scientific research on the safety and usefulness of marijuana as a treatment for seizures and other medical conditions.
Relief is coming – slowly, in South Australia’s case – for people like Ray and also for epilepsy sufferers desperate to access medicinal cannabis without having to break the law and buy it on the black market, as many do now.
It’s difficult but not impossible to access it legally in South Australia. The Federal Government passed laws last year to allow for the cultivation, production and prescription of medicinal cannabis. It has been left up to state governments to come up with their own models for patient access.
This is where South Australia – which historically has had some of Australia’s most relaxed marijuana laws including decriminalising minor cannabis offences in 1987 (later wound back) – is lagging behind.
Victoria passed its Access to Medicinal Cannabis Bill in April last year. Children with epilepsy will be the first to have access to treatment this year. It has also started trials for cultivating cannabis for medicinal purposes, and created the Office of Medical Cannabis. New South Wales is leading the way with clinical medicinal cannabis trials and has a register that terminally-ill patients can join and be given leniency under existing cannabis laws.
“Other states are taking action, but the South Australian Government has sat on its hands,” SA Greens MLC Tammy Franks says.
“All SA Health has done is release a discussion paper. While public consultation is crucial, the fact that our government continues to ignore the cries for help and leniency from ill South Australians is unnecessarily cruel.”
On 4 January, South Australian Police reported medicinal cannabis activist Jenny Hallam, 44. They seized cannabis products and equipment from her home in Hillier, near Gawler. She had allegedly been supplying cannabis oil to the terminally ill and epilepsy sufferers at no charge for two years.
Police didn’t charge her; they have two years to decide whether to do so. Since the raid, Jenny has campaigned for access to medicinal cannabis, speaking at rallies in Adelaide and other cities. A Facebook page set up to support her cause has 2686 likes. She has engaged high-profile barrister Heather Stokes.
“I feel overwhelmed by the support from all over Australia,” Jenny, a wildlife carer, says. “I’m a bit of a quiet person and I certainly didn’t expect all the attention.”
Jenny has an incurable condition called fibromyalgia, which causes pain to her whole body. She was on morphine for 15 years and her health deteriorated.
“I got down to 38 kilograms,” she says. “The drugs were not doing me any good. I heard about cannabis oil and thought I would give it a try. I started making it myself. It did amazing things for my health and I ended up going off the morphine, oxycontin and lyrica all within a few months. Everyone kept telling me, ‘You look amazing, what are you doing?’ Word of mouth led to sick people, including cancer patients, and parents with epileptic children, contacting me.”
She says morphine had “horrific” side effects, including severe itching.
“In the middle of the night I would start scratching without realising it, and in the morning I would wake up with blood all over me – I would literally scratch my skin off,” Jenny says.
“A lot of people don’t realise that morphine creates more pain over time, so if you’re using it long-term, it will actually damage the pain receptors in your brain and start telling you that you’re in more pain than you really are. When I went off the morphine, I suddenly realised I didn’t have as much pain.
“All the pharmaceutical drugs have massive side effects – you just have to read the packets to realise that. It’s disgusting. With cannabis oil there are really only two main side effects: you sleep better and you get a better appetite. I’ve said all along that I’m happy to have my cannabis oil tested because I know it’s safe and it works.”
Jenny has been working with Tammy Franks for two years, trying to legalise medicinal cannabis in South Australia, with a particular focus on affordable products. Ms Franks became involved after being approached by parents of epileptic kids, and hearing about numerous patient success stories involving medicinal cannabis.
The internet is awash with articles about sick and dying people making miraculous recoveries.
“I don’t think medical cannabis is a miracle cure,” Ms Franks says, “but I think it is a cure that should be on the table, particularly when you see the success other countries like Israel and Canada have had with it.
“On the epilepsy front, these kids are being pumped with serious drugs with quite dangerous side effects. It seems to me a no-brainer that we should be having this conversation and looking at it as a solution.”
Dr Janice Fletcher, president of the Australian Medical Association (SA), says medicinal cannabis should be treated like any other drug that is put forward for therapeutic use.
“If the evidence is there, put it under our current regulatory structure so that it is subject to the same safety checks and balances as any other medication,” Dr Fletcher says.
“Though there is a growing body of evidence regarding the therapeutic use of cannabinoids, it is still experimental.”
The AMA acknowledges that cannabis has constituents that have potential therapeutic uses.
“The appropriate clinical trials of potentially therapeutic cannabinoid formulations should be conducted to determine their safety and efficacy compared to existing medicines, and whether their long-term use for medical purposes has adverse effects,” Dr Fletcher says.
She says the AMA supports therapeutic cannabinoids that are deemed safe and effective being made available to patients for whom existing medications are not as effective.
“Prescribing should be via the person’s medical specialist treating them for the conditions for which the medicinal cannabis is required. Our advice to doctors will be to follow the evidence when it comes to prescribing decisions – for medicinal cannabis or any other drug.”
The medicinal cannabis debate has escalated in South Australia recently, at a time when the community seems more willing than ever to look at this and other contentious issues, including voluntary euthanasia.
The latest push to legalise voluntary euthanasia in South Australia, in November last year, was defeated by only a single vote in Parliament.
South Australia has Australia’s highest unemployment rate. It’s considered politically expedient to explore all job-creating industries, however contentious they may be. The response from both Labor and Liberal parties to the potential of the medicinal cannabis industry has been hardly enthusiastic.
Premier Jay Weatherill has said little publicly about it. With a state election looming, both major parties seem to be adopting a careful approach.
“The really offensive part of what the South Australian Government has done is that every patient who writes to the Health Minister wanting access to medical cannabis is referred to the Minister for Mental Health and Substance Abuse [Leesa Vlahos]. These people are completely and utterly offended by that, and rightly so. It’s not substance abuse, it’s a health issue,” Ms Franks says.
“Somebody from the Weatherill government needs to step up and show some leadership. They need to make patient access a priority, not an afterthought. The polls show it would be popular – I’m not sure what they are scared of.”
When Fritz contacted Health Minister Jack Snelling’s office for a comment, we were referred to Leesa Vlahos, and the Minister for Manufacturing and Innovation, Kyam Maher, the latter hosting a roundtable on 30 January to look into opportunities for the economic development of industrial hemp and medicinal cannabis.
“All states in Australia have very similar rules for the prescription of medicinal cannabis, and South Australia is committed to working with the Commonwealth Government to ensure processes are as streamlined as possible,” Minister Maher says.
“Federal laws were introduced last year which allow for the prescription of medicinal cannabis by authorised medical practitioners and dispensing by pharmacists. This means that medicinal cannabis can currently be prescribed by a medical specialist and dispensed in South Australia with approval from the Commonwealth’s Therapeutic Goods Administration (TGA) and SA Health under the Special Access Scheme.”
But Ms Franks points out that it’s virtually impossible for a patient to access medicinal cannabis in South Australia under the current system.
“While it’s technically legal to access it, it’s bureaucratically impossible to work out how to do it – especially for patients in chronic pain or grappling with debilitating or terminal illnesses,” she says.
“If you had access to an enormous amount of wealth, you could get something imported and go through the TGA and federal processes, but you would be paying $1000 a bottle minimum, more than likely, and nobody has that money, particularly the people we’re talking about in these situations who are sick and suffering.”
Shadow Minister for Primary Industries David Ridgway says: “The State Liberals will always consider new industries that can create jobs and benefit South Australia. We are happy to support legislative changes that would allow the cultivation of industrial hemp in South Australia, provided farmers comply with all necessary regulations.
“We are supporting the medicinal cannabis trials in New South Wales. If the medicinal cannabis industry was established here, it would need to be highly regulated like our opium poppy industry.”
Shadow Minister Ridgway represented the Opposition at the roundtable, which he describes as “productive”.
“It is important the government now addresses the concerns and issues raised,” he says.
“The next step will involve a second roundtable, within 90 days, following an undertaking by the government to bring back more information about the way forward.”
In December, Adelaide-based company the Australian Cannabis Corporation (ACC) publicly criticised the SA Government on ABC Radio for not being more supportive of its proposal to use half the existing buildings at the soon-to-be-closed Holden Elizabeth factory to grow medicinal cannabis. Holden will shut in October with the loss of 1000 jobs.
ACC – which has prepared its federal licence application to run the plant but is waiting on the next move by the State Government before it actually submits it – says the Elizabeth project would create 2500 jobs and generate $800 million a year. It has other sites earmarked if the Holden deal doesn’t come off.
“We’re waiting to get clarity over the patient access scheme before we invest a significant amount of capital,” ACC co-founder Ben Fitzsimons says.
“While other states have announced their patient access schemes, our state has chosen a wait-and-watch approach, which can be viewed as highly frustrating or clever, depending on which side of the coin you’re on.
“We’ve been able to see what other states have done and where we can be unique. These things never go as fast as you like. We’re in new territory.”
Ben says the medicinal cannabis industry is booming.
“It’s probably the hottest business in the world right now, probably second only to drones. The business of medicinal cannabis and even recreational cannabis in the USA is huge. It’s happening all over the world – Ireland, Spain, Canada. We’re sitting on a $1 billion industry in Australia; the data suggests that. We just need permission to get on with it.”
Minister Maher says: “The Holden site is owned by General Motors, who have indicated that a sale process will commence in coming months. Anyone with a proposal to use the site is encouraged to take part in the sale process.”
Shadow Minister Ridgeway says: “It is my understanding that industrial hemp would need to be grown on large broadacre scale to be commercially viable, so I am not sure that the Holden site would offer enough scale.”
Hardly ringing endorsements.
Ms Franks says the Holden factory proposal would give hope to the northern suburbs.
“The people involved in ACC are entrepreneurs and I think South Australians would welcome a Richard Branson-type attitude in the northern suburbs, but I don’t think the cultivation and manufacture has to be around the Holden factory.
“I have spoken to farmers in the south east and people in struggling post-bushfire areas. This is a crop you can grow quite quickly. Why on earth wouldn’t South Australia step up and grab that opportunity?”
Jenny Hallam is doing some work for Victorian company Cannabis Life, which has applied for a licence to produce medicinal cannabis. She hopes to have her affordable cannabis oil products on the market this year.
“There is no time to waste,” Jenny says, adding she’s not well and that her stress levels are high.
“We’ll continue to nag the government until they listen. This is not like gay marriage – deciding whether two people should be allowed to get married or not – this is about keeping people alive, including young children.
“People are dying. Parents are desperate to save their children and are watching them suffer horrendously. The State Government keeps telling us medicinal cannabis is coming, but if it is, why haven’t they started educating the doctors? What are they afraid of?”
Prime Minister Malcolm Turnbull has rejected Pauline Hanson’s call for an amnesty on medicinal cannabis accessed on the black market. He said it would be “irresponsible” because there were no controls over medicines bought outside official channels.
Ms Franks has called on Jay Weatherill to make a “captain’s call” on an amnesty.
“Many people have contacted me in desperation and frustration about medical cannabis access,” Ms Franks says. “They are patients and parents of sick kids who are desperate to get help. They are being forced underground to access it.”
Ray Milburn lives in hope that he will have the option one day of taking medicinal cannabis. In the meantime, he’s turning his 24-year nightmare into a positive by helping fellow sufferers via online discussion sites.
“Some days I sit here doing nothing and think, ‘Well, I’m just a drain on society’. A big thing with chronic pain is the depression. But I know I can help new sufferers and it gives me a reason to keep going,” he says.
“A woman posted on a forum that her six-year-old daughter had complex regional pain syndrome in her ankle. She heard a noise in a cupboard under the staircase. She opened the door and her little girl was curled up inside. She said, ‘Darling, why are you in there?’ The little girl said, ‘I’m hiding from the pain, Mummy.’
“I just broke down. I was sitting there crying. How do you explain to a six-year-old that you can’t fix the pain?
“If you had a child having a hundred fits a day and you knew that just one drop of cannabis oil a day would reduce it to one seizure a month, you would break the law, wouldn’t you? The point is, children are dying. You shouldn’t have to break the law to keep your kids alive.”
Note: Since this article was written, the Turnbull Government has given the okay for approved companies to import, store and sell medicinal cannabis until domestic production meets local needs.
Should we make medicinal cannabis legal in South Australia? Share your thoughts in the comments, below.