After Grace* was diagnosed with cancer earlier this year, she turned to medicinal cannabis.

But accessing it through legal medical channels was a challenge: she faced long waiting times and substantial paperwork.

“I was offered through an illegal source where I could get it very quickly, and because my tumours were aggressive and time is of the essence, I decided to opt for the non-medical option,” she tells ABC RN’s Life Matters.

Grace started to get cannabidiol (CBD) oil sent to her in the post, in an olive oil bottle.

But concerns about the illegalities of the drug started to weigh on her conscience, and she worried about the chemical composition of the CBD oil she was taking.

“If you’re obtaining it through a medical source and it’s been approved, there’s stringent procedures and processes in order to create that oil. Whereas if I’m getting it off an illegal source, it’s hard to actually know exactly what I’m taking,” she says.

She decided to “have another look at obtaining it through the medical channels” — but in the end, she opted to “stick with the illegal source”.

“It just seemed like the most easiest, cost effective option for me,” Grace says.

Navigating the system

Nicholas Lintzeris, an addiction medicine specialist at the University of Sydney, says Grace’s experience is not uncommon.

“The legal system we’ve had available now has been in place for about four years, and in the early days for the first couple of years we had a very clunky system,” he says.

Professor Lintzeris was the lead researcher in a study on how Australians use medicinal cannabis — for everything from chronic pain to mental health conditions.

The online survey of more than 1,300 people found that while cannabis is used widely for medicinal reasons, the vast majority of respondents don’t get it from their doctor.

“It was very difficult for patients to be able to find doctors who were knowledgeable and interested, the products were quite expensive, the legal hoops were quite pronounced. There were lots of hurdles, paperwork and so forth,” Professor Lintzeris says.

“Most of our respondents were working. They were people who were holding down jobs, mums and dads with kids. So engaging with illicit activities such as that was a concern.”

Life Matters listeners shared stories of similar hurdles:

“I have a well noted and long-term chronic pain condition, which has proven relief with CBD. Yet I have been constantly stymied in my attempts to get it prescribed. Thus I am forced to go through the black market with all its problems.”

“My husband was prescribed medicinal cannabis for his cancer pain — incredibly expensive — around $350 for a very small bottle that may last a couple of months only. It was very helpful but we just couldn’t afford to keep buying it.”

“I’d rather be using medical cannabis than opium products any day. But it is so expensive to access legally and yet opium products are subsidised by the government. The addiction story for opioids is horrendous. Cognitive dissonance [is] the right word for our culture.”

Access to legal medicinal cannabis is granted under the Special Access Scheme. It’s managed by the Therapeutic Goods Administration, and you need a restricted prescription for it.

The application needs to be done by a doctor on your behalf, and it must show you have a medical reason for accessing cannabis.

Between the start of 2020 and May 31, more than 18,000 applications for medical cannabis were approved by the TGA.

Professor Lintzeris says the system has adapted and improved since medical cannabis was legalised at the federal level in 2016.

Initially people would face wait times of up to two months for approval, he says, but now that’s more like two to four weeks — and that’s not the only change.

“I think we’re seeing some changes in the development of the marketplace, as more doctors take up this option and get better educated around what medical cannabis is, as the price of products is reducing and as more products come onto the market, and there’s more and more consumers who are getting experienced with legal supplies,” Professor Lintzeris says.

An ‘anachronism’ around drug driving laws

But he argues that some areas of the law are still lagging behind.

Driving with THC in your system is a criminal offence, even if you’ve been prescribed medical cannabis.

The standard advice for cannabis patients is to wait five days before driving, or risk a fine or a suspended licence, but there is ongoing debate about how much impairment THC actually causes.

“There’s this inconsistency in Australia where we have a group of drug driving laws that really reflect what made sense for illicit cannabis or drug use,” Professor Lintzeris says.

“Unfortunately, a THC-based medicine gets caught up in that drug driving. We have this anachronism in Australia where no other medication that’s legally prescribed is subject to the same drug driving issues as medical cannabis.”

It’s something that proved a huge worry for Grace.

“My biggest concern was that if I was to get pulled over while driving, if I registered for THC in a random drug test, I could lose my licence,” she says.

Concerns surrounding ‘quality control’

Like Grace, Professor Lintzeris also points out that that if you’re self-medicating rather than going through a doctor, there are risks.

“There’s no capacity of standardisation of product or quality control, both in terms of what’s in this batch, how much THC or CBD in this batch compared to the batch from last month,” he says.

Despite the legalisation of medicinal cannabis in Australia, group bodies such as the Royal Australian College of General Practitioners (RACGP) continue to take a cautious stance on prescribing medicinal cannabis patients, calling for more high-quality research into the safety and effectiveness of it.

The RACGP pointed Life Matters to a statement, which said it doesn’t “recommend the use of cannabis products”, but does “recognise that a specialist GP may offer to prescribe it to a limited number of patients”.

After four months using CBD oil through an illicit producer, Grace is willing to accept the risks.

“I do find that there is little to no side-effects of using the cannabis oil — which was a concern initially — and it’s a cost-effective option,” she says.

“When I went down that [medical] channel, what I found was that there were a lot of hoops I had to jump through, a lot of paperwork, and a lot of people who had to be involved.

“And even then if I was deemed worthy of the CBD oil, I was going to be sent this particular oil every six weeks.

“But the illegal CBD oil I got straight away, it was very easy to access and cost effective. So I opted to stay using the illegal source.”

*Name changed to protect the person’s identity.