Kat Cooper spent $196 every 12 days to purchase 1 millilitre of CBD oil to reduce her daughter Ella's epileptic seizures. But she can no longer afford it.
Since then Ms Cooper has had to watch the 12-year-old deteriorate.
Ms Cooper is the founder of Ella's Purple Promise, an organisation that advocates for epilepsy awareness and affordable access to medical cannabis.
"I'm not saying that every child that is diagnosed with epilepsy needs to have CBD oil," Ms Cooper said.
"There are definitely pharmaceutical medications that can treat seizures quite effectively.
"But [there are] kids like Ella who are complex, who are never going to be seizure free … they have tried every PBS med listed and alternate therapies.
"It's these complex kids that need to be given that quality of life."
Originally accessing the CBD oil via a clinical trial in Victoria, Ella had a 30 per cent reduction in the number of seizures experienced per day.
"When you have a child who is experiencing hundreds of seizures a day like Ella does, a 30 per cent decrease is massive," Ms Cooper said.
"I could see changes in her. She was brighter physically. The dark circles were gone from under her eyes. She wasn't as tired.
"Academically, her grades went up. She was coming home from school and actually being able to tell me stuff she'd learned and retaining that information."
But in 2021, the medical trial ended, forcing Ms Cooper to purchase the oil to continue Ella's treatment.
Despite needing 4 millilitres of CBD oil every 12 days, Ms Cooper could only afford 1 millilitre, but eventually, the prohibitive cost forced Ms Cooper to stop buying the oil entirely.
"You go into a trial knowing that it may end, and it did," she said.
"So, we're back here in South Australia needing to pay for the drug, and unfortunately … we've had to stop.
"It's just not feasible … it's not financially affordable for families and we've just seen a regression in Ella's [quality of life].
"The seizures are back, the emotional toll it's taking on her and her mental health as well — it's been a really challenging year."
The politics of CBD
Mount Gambier MP Troy Bell has been working with Ms Cooper over the past four years, advocating on her behalf for affordable access to medicinal cannabis within South Australia.
"I think the state government has a role to play in this space," he said.
"I've got parents telling me that this stuff works for their children, but it's so costly and so prohibitive, and they're making very difficult decisions around being able to afford CBD oil."
He said the demand for CBD oil, coupled with a lack of supply, was the main factor driving up prices.
Mr Bell said he intended to introduce a bill into parliament to try and regulate the growth and manufacture of the oil to drive down the price.
"It is a sensitive topic," he said.
"There are concerns that people in the community do have around the manufacture of CBD oil, but it all comes down to approval.
"People can't just go out and plant cannabis and extract CBD oil … there's an approval process that somebody would have to go through to be approved to produce it."
Despite the sensitivity, Mr Bell feels confident attitudes are changing, both within the public sphere and in parliament.
"I think people understand that this is not legalising cannabis," he said.
"CBD oil has no THC, or very low levels of THC [the substance primarily responsible for the effects of marijuana on a person's mental state], so we're talking about two very different things.
"There's certainly upper house support. We've just got to make sure we can get the lower house support."
