The Joint Committee on the Legalisation of Medicinal Cannabis heard evidence that the man grew his own cannabis to make large quantities of cannabidiol (CBD) oil to treat his epilepsy as buying the required dosage was too expensive.

Graham Law told the Committee he was taking 500 milligrams per day of CBD oil made at his own home from cannabis strains without the psychoactive THC component. This is about 12 times more than the average daily dose for a medicinal cannabis patient, he said under Parliamentary privilege.

Law told the Committee he required the higher dose to treat severe epilepsy stemming from a traumatic brain injury sustained during a surfing accident.

“I have a rare form of epilepsy where basically my heart stops when I have a seizure,” Law told the Joint Committee chaired by Greens upper house member Tammy Franks.

“It can be very serious now to the extent where I can have all-day seizures, eight-hour seizures, 10-hour seizures, with regular heart stoppages and breathing stoppages during that, so I become unconscious.

“At one stage I was having 40 to 50 large seizures a month – that’s the extent of it.”

Law detailed how he tried to treat the seizures with traditional prescription medication – “I went through a wringer of drugs” – but that once he researched cannabis-based medicine and discussed using it to treat his condition with his neurologist, he started to grow his own plants.

“While it didn’t stop my seizures it did reduce the frequency, and for the most part my heart would not stop beating during a seizure,” Law told the Committee, established in March this year.

“That was a success straight up, that was the success I was after.”

But his condition meant he required 500 milligrams per day of CBD oil, as recommended by his neurologist. If he pursued a prescription for the drug, Law said he would have to pay $190 for one 1000 milligram bottle and he could get two bottles at a time, totalling $380.

“One bottle will last me two days. I can’t fill a prescription every four days,” he said.

“Even if I was able to fill a prescription constantly, that’s $2850 a month in costs. I’m on a disability pension and I get $2000 a month.

“Once prescriptions came around, I looked into it, and it’s impossible for me to survive on. That’s why I continued with making illicit medicine.”

The process of making the CBD oil required him to grow plants at home, which put him on the wrong side of the law with police raiding his home and seizing his oil, five plants, and manufacturing equipment on two occasions.

“For me, breaking the law was a no-brainer because I am saving my life, straight up,” he told the Committee.

“It was successful for many years, no worries; I am a quiet man.”

Speaking to InDaily, Committee chair Franks said Law’s evidence “highlighted that while we have legalised access to medicinal cannabis, when it’s unaffordable it pushes people into the black market and criminalises patients”.

“That was never the point of moving to legalisation of medicinal cannabis,” Franks said.

“We have to find ways for compassionate access or amnesty for those people who need this medicine but simply can’t afford it.

“It does seem that it is wildly out of control in terms of pricing.”

She added that “many other people” in South Australia were in a similar situation to Law.

“[They] are accessing the black market and are in danger doing so but they do it for their health, and they do it so that they can live better lives.

“We really need to see them as patients, not as criminals.”

When asked by Committee member and MP David Pisoni about whether a licensing regime could be implemented to permit at-home production of CBD oil for those who cannot afford the prescription product, Law said that was a “reasonable” proposal.

“It is such a simple process, it wouldn’t be difficult to have a basic training course to show people how to do it, because if you can bake a cake, if you can make pancakes – any of that stuff – if you can cook and follow a recipe, you can do this,” Law said.

However, Law said the growing process was so arduous that he would stop growing cannabis if prescription versions of CBD oil were made cheaper or entirely free.

“I would not grow; there is a lot of work involved…to grow good, clean, organic medicinal cannabis,” he said, noting it takes eight months to make the oil from seed to plant to product.

“It’s an eight-month season and you are tied to your place for eight months.”

Without his products following a second police raid earlier this year, Law said his seizures had returned.

“[CBD oil] has changed so much of my life and now that I don’t have it, I am back to too many seizures,” he said.

“My seizure rate has increased way too much.”

The Committee continues with interim recommendations into “the most urgent matters” to be handed down early next year according to Franks.