Photo: Selling and using homemade medicinal cannabis oil is still illegal. (ABC North Coast: Catherine Marciniak)
Sixty-five-year-old Julie has never smoked a joint in her life but has started treating herself with medicinal cannabis for pain.
"I did have cancer and as a result I have neuropathy [nerve pain] in my feet, and arthritis in my fingers, and since I've been using medicinal cannabis that is starting to improve," Julie said, who did not want to use her real name.
"The big one though is I have sports injuries — spinal and ligament wear and tear — and now my pain is 95 per cent healed."
Julie has been taking two drops a night of a cannabinoid oil and a paste with a low tetrahydrocannabinol (THC) dose under her tongue in the morning.
She is one of a growing number of senior Australians who are buying homemade medicinal cannabis products for pain relief, despite it being early days in scientific research to support the drug's effectiveness.
While there is a legal process for using medicinal cannabis, it can only be prescribed by a medical practitioner and this is done on a case-by-case basis.
General practitioners can apply to the Therapeutic Goods Administration (TGA) for approval for a script for individual patients or can become authorised prescribers.
To date the TGA has approved applications for chemotherapy-induced nausea and vomiting, paediatric epilepsy, cancer pain, anorexia, and in some cases of palliative care.
It's in our chemistry
Although research projects are underway in Australia and internationally, to date there has been mixed evidence that medicinal cannabis is effective for pain relief.
One of the reasons for the intense interest to find out more is that we know our own bodies make cannabinoids — chemical messengers that are important to our physiology.
Perminder Sachdev, a neurophysicist and co-director of the Centre for Healthy Brain Ageing (CHeBA) at the University of New South Wales in Sydney, said humans had receptors for cannabis in the body: CB1 and CB2 receptors.
"The CB1 receptor is present in the hippocampus and in other regions of the brain, and the hippocampus is quite important for memory," Scientia Professor Sachdev said.
The CB2 receptor is present on white blood cells, which are important for managing inflammation and immunity.
"We know that the activation of these receptors does lead to the reduction of some chemicals in the brain, and there is a reduction of inflammation in the brain," Scientia Professor Sachdev said.
"So, people have wondered what role these receptors, or any drugs that act on these receptors, could be playing in relation to brain function."
Medicinal cannabis pilot studies include research on pain relief, managing behaviour problems in dementia patients, relief for people with Crohn's Disease and animal studies to see if cannabis can prevent Alzheimer's Disease.
Seventy-year-old afraid of drug testing
A year ago, 70-year-old pensioner Paula Vam Vas had a fall, tore the meniscus cartilage in her right knee, and was placed on a public hospital waiting list for surgery.
"It was really painful and the option my doctor gave was [Panadeine] Forte and other opiates for the pain and for sleeping," Ms Vam Vas said.
"I didn't want to take them, but the pain was quite severe."
A long-term advocate for decriminalising marijuana, Ms Vam Vas decided to try a cannabinoid oil that had small amounts of THC, the psychoactive ingredient of cannabis.
"So, it doesn't get you stoned," Ms Vam Vas said.
She was adamant the relief she felt was genuine and not due to a placebo effect.
"Until I took it, I wasn't convinced that it was going to work … it [her knee] hurt so bad," Ms Vam Vas said.
"But it put me to sleep, while I was asleep the pain stopped, and during the day I took it at different times when I could feel the pain coming on and it gave me really good relief."
Working through a legal process to access medicinal cannabis was not an option for Ms Vam Vas.
"My doctor doesn't want to know about it and the doctors that can prescribe it are few and far between, and it's very expensive," she said.
"What I would pay $90 a month for, would be around $200."
Recently Ms Vam Vas stopped treating herself with medicinal cannabis.
This was, she said, because a friend using it to ease the effects of chemotherapy was pulled over by the police and charged with driving with illicit drugs present.
"The interesting thing about it is you're not charged with driving under the influence of a drug, you are charged with having an illegal drug in your system, it doesn't matter to what degree," Ms Vam Vas said.
Opiates versus medicinal cannabis
Ms Vam Vas has tried to manage her pain without the use of drugs, but said when it became unbearable, she took the Panadeine Forte that her doctor prescribed.
"He's happy to give it to me because he knows I'm in pain," Ms Vam Vas said.
"It certainly knocks me out, it's terrific like that, but if I had been taking it all year I wonder what effect it would have on my kidneys, my liver, my bowel and my stomach."
Leah Bisiani, a registered nurse who specialises in the care of elderly people in nursing homes, has become an advocate for more research into medicinal cannabis products as an alternative pain relief treatment for patients in aged care.
"It is a huge area that has been ineffectively managed for a long time," Ms Bisiani said.
Residents of aged care facilities were prone to muscular skeletal pain, neuropathic pain, and pain associated with cancer and palliative conditions.
"The majority of our aged care population are on opiate regimes with numerous amounts of additional medication to counter the side effects of the opiates they are on," Ms Bisiani said.
"There are the obvious ones like constipation because of codeine, but there are also sedation effects where people become delirious.
"It can cause increased confusion, anxiety and agitation, nausea and it places them at a higher risk of falling."
Ms Bisiani said she believed medicinal cannabis had fewer side effects and that anecdotal evidence suggested it was a viable alternative to opiates for pain relief.
"Just like you do with any medication, you need to monitor it effectively, we can change the dosage, so we can meet the individual needs.
"The safeguards already in place for opiate regimes could apply to medicinal cannabis regimes."
Doctors reluctant to prescribe medicinal cannabis
As of January 31, 2019 only 54 doctors across Australia were registered as approved prescribers of medicinal cannabis.
The TGA said because of the small numbers it could not provide information on how many of these doctors practised in regional Australia.
A TGA spokesperson said more than 3,500 people had been approved to access medicinal cannabis under the Special Access Scheme.
In a statement, they said it was "important to note that the TGA does not vouch for the quality, safety and effectiveness of unapproved medicinal cannabis products".
The Australian Medical Association (AMA) has consistently said the effectiveness of medicinal cannabis for treating pain and other health problems was still not proven.
"We don't know enough yet," Dr Kean Seng Lim said, NSW AMA president.
"All doctors tend to be conservative and err on the side of safety and that is entirely appropriate, to make sure as doctors we first do no harm to our patients.
"We really need to wait for the results of these trials to come out before we can make an educated choice on this matter."
Has the horse bolted?
In a 2016 report by the Australian Institute of Health and Welfare, 85 per cent of Australians were found to favour the use of cannabis for medicinal purposes.
Internationally, 30 countries have given the green light to medicinal cannabis in some capacity.
There is only one medicinal cannabis product on the Australian Register of Therapeutic Goods, which was approved for use in some patients with muscle spasm resulting from multiple sclerosis.
Michael Balderston from the Hemp Embassy in Nimbin on the NSW north coast said the legal access the Australian Government had provided to medicinal cannabis products was too limited.
"They made it a tiny gateway … it's like the chain is still on the gate," Mr Balderston said.
"It's extremely hard to get permission through your doctor, [there are] lots of forms, two levels of doing it in some states, so I think doctors aren't inclined to do it and it has to be a really serious condition."
Mr Balderston also claimed the current research was not adequately testing the homegrown products that he believed were superior to the pharmaceutical cannabis products used in most clinical trials.
"So, people are finding ways to access it across Australia."
Mr Balderston advocated a licensing system for the cottage industry of people growing and making medicinal cannabis, with quality testing and limitations on supply.
When challenged on the need for a health professional to know exactly what was in a drug to safely administer it, Mr Balderston said "we could be telling people exactly what is in it, if we were allowed to test people's medicine that they are making".
"It's a massive 'hemp-ployment', we call it," he said.
In response to Mr Balderston's statements, the TGA said a medicinal cannabis product was required to meet the Therapeutic Goods Order (TGO) 93, which ensured the product did not contain more than defined limits for contaminants.
The TGA also clarified that medicinal cannabis products being supplied via the Special Assistance Scheme and the approved prescriber pathways were "unapproved products that have not been evaluated by the TGA for safety, quality and effectiveness".
In the meantime, it seems many senior Australians are choosing not to wait for scientific evidence to back up their personal experience.
"Where I got my medicinal cannabis, they supply probably 200 people a week, I would say 90 per cent of them have never had marijuana in their life, they've never taken an illegal drug in their life and they're ageing," Ms Vam Vas said.
"The fact that it's an illegal substance, that really disturbs me," Julie said.
"I hate having to live like this, but the benefits are so great I have to continue to break the law, because while it works I'll keep using it."