Alice* watched her four-year-old son Rhys* be loaded onto an air ambulance bound for Sydney, and thought, this can’t go on.
It had been the second time in two months that Rhys had been airlifted from his home in Canberra to Sydney for a five-day stay. The month prior, his condition was so bad that Alice and her family had thought they’d lost him.
Rhys was born with a chromosome disorder, which means he needs a wheelchair and cannot walk, talk, feed himself nor dress himself. On top of this, he was suffering regular unexplained pain episodes which saw his body stiffen for hours on end.
“We were desperate,” Alice says. “There was nothing we could give him apart from opiates to control the pain, but opiates meant [hospital staff] would have to take over his breathing.”
She started researching alternative pain relief methods and quickly zoned in on medical cannabis. Via personal networks, she found an Australian-based distributor, and contacted them to purchase a supply, despite not having a prescription.
She started giving Rhys regular doses: starting with one drop morning and evening, and rising to three drops each time. And almost instantaneously, things turned around.
“It’s made a huge difference. He’s put on weight, he sleeps better and he hasn’t been in the hospital with pain related issues since we started it,” she says.
Alice is one of a growing number of parents giving their children cannabis oil to help mitigate the effects of chronic illnesses. But they do so knowing there is a risk: uneven legislation across states governing the prescription and use of medical cannabis means that some risk fines, even jail, for obtaining, growing or supplying the drug.
The Royal Australian College of General Practitioners is one group working hard to ensure the legislation is standardised.
"It’s almost impossible to jump through all these hoops and prescribe cannabis in a timely and reasonable fashion.”
“If we look at the scientific evidence, there’s now conclusive and substantive evidence that [medicinal cannabis] is effective in patients with severe and disabling pain,” says Dr Bastian Seidel of the college.
“There’s no nationally consistent regulatory framework covering cannabis. It’s very confusing if you’re a medical practitioner and you feel you’ve exhausted all other avenues to treat a patient, it’s almost impossible to jump through all these hoops and prescribe cannabis in a timely and reasonable fashion.”
Marijuana has been decriminalised for medicinal use across the country, yet different states have different laws, and it remains difficult to source.
Marijuana has 113 active chemical components, and when it is processed for medical use, the main psychoactive component THC (Tetrahydrocannabinol) is removed, meaning you can’t get high. It is CBD (cannabidiol) that users want to help treat medical conditions such as multiple sclerosis, epilepsy or pain.
"It’s had such a positive impact on Rhys and our whole family that I don’t want to lose it."
Still, companies supplying the oil in Australia can face legal action or being shut down. This is precisely what happened to the organisation that initially supplied Alice. After it shut down she looked elsewhere, and now obtains the oil from a company in the Netherlands which sends her packages through the mail.
“We’ve had no problems, none of our packages have been held up at Customs, but we know the legalities around it are grey,” she says. According to Alice, the oil doesn’t contain THC and has all ingredients properly listed, however even after looking at the TGA’s website she can’t work out whether it’s legal or not.
The European supply has added benefits: it has a purer taste, meaning Rhys can swallow it comfortably, and it is also thoroughly batch tested, with results available to view online.
“It’s had such a positive impact on Rhys and our whole family that I don’t want to lose it,” says Alice. “I’d gotten to the point where I felt like I wasn’t coping. Life was so unpredictable and ending up in hospital for days would really disrupt our lives. I have other children who still need to be picked up from school, I have work deadlines to meet. My other children’s behaviour was starting to deteriorate. Now, they’ve settled a lot. It’s made a huge difference, everybody’s less stressed and I feel we can manage a bit better.”
Alice wants proper regulation so she can be assured of consistent supply and the knowledge she isn’t breaking any laws.
“If a medical professional feels it’s appropriate to prescribe medicinal cannabis then they should be able to."
Dr Seidel says obtaining medicines on the black market limits the capacity of the medical profession to monitor how patients respond.
“In 2018 it’s completely unacceptable to have to get drugs on the black market,” says Dr Seidel. “If a medical professional feels it’s appropriate to prescribe medicinal cannabis then they should be able to. If it’s being accessed on the black market we don’t know what’s being put in, we don’t know the dose being given, and this isn’t in the interests of the patient, of parents, or of society.”
*Names have been changed.
The information in this article is provided for information only and is not intended to be used as medical advice. This article should not be used as a substitute for your own health professional’s advice.