Mr BELL (Mount Gambier) (16:02): I want to talk about medical cannabis, something I have spoken about in this house many, many times before. It is my firm belief that South Australians should have access to the best healthcare and treatment options for their condition and quality of life. Many are turning to medical cannabis products, a treatment that is succeeding where some traditional medications have failed. However, our state needs to address the major legislative and jurisdictional challenges to the production and supply of medical cannabis.
Last year, the Premier announced that a pilot will be established to trial the use of medical cannabis to treat severe epilepsy in children in this state. For people like Mount Gambier's Campbell and Julie Hopgood and their daughter Alyssa, this trial cannot come soon enough. Alyssa is 14 and, along with an intellectual disability, has Lennox-Gastaut syndrome, which is a rare and severe form of epilepsy that develops in childhood.
Since the age of one, Alyssa has suffered seizures multiple times of day and night that have severely affected her quality of life. At one stage, an EEG showed she was having four visible seizures every 10 seconds. Although she has a bright and cheeky personality, her constant seizures have stolen her ability to communicate, read or write. She is currently on eight medications and a strict ketogenic diet. It has severely affected her family's life
For five months, Alyssa literally slept in a swag outside her parent's bedroom so they could help her if she had a tonic seizure during the night. Campbell and Julie have tried every medication on the market in multiple combinations to try to control her seizures, including specialised drug trials. Nothing has worked long term, and a lot of them have caused major side effects and, at worst, for Alyssa to attempt self-harm and become aggressive.
Campbell and Julie said they begged their neurologist for three years to try medical cannabis, and in May 2020 they were written a script and tried CBD oil for the first time. They described to me giving her the first dose of oil via a syringe on 18 May last year. For the first time in her life, Alyssa slept through the night and did not have any visible seizures. The pattern continued day after day, night after night.
Campbell and Julie set up in her room a specialised camera (a SAMI), which records every movement and rings an alarm if a seizure happens. Since July last year, fewer than 20 seizures have been recorded. Not only have the seizures lessened but there have been major improvements in Alyssa's life due to the combination of CBD oil, medication and the diet. Her cognitive abilities, participation and focus have improved and the Hopgoods' quality time with their daughter has also improved.
The Hopgoods are desperate to continue treating Alyssa with CBD oil, but the medication comes at a cost. At $150 to $200 for one bottle that lasts around 12 days, it is costing them $500 a month for the oil. That is $6,000 a year—a big financial burden for any family or individual to bear. Now they are stuck in a place recognisable to quite a few South Australian families: how do the Hopgoods afford a treatment that is working for their daughter? They have applied for a subsidy based on compassionate grounds but have been knocked back. Ironically, CBD has been recommended to be subsidised for another rare form of epilepsy that begins in childhood, Dravet syndrome, but not for Lennox-Gastaut syndrome.
The medical cannabis industry needs regulation, controls and a unified approach from both state and federal governments. What we need is a regulatory framework that aligns with other states and the commonwealth and legislative change to support this. We also need to subsidise costs, streamline access pathways and conduct more research and long-term studies into the effects of this drug for multiple conditions. Importantly, we need to ensure South Australians have access to the best health care and treatment options in the world. I would like to thank Minister Wade, who I am about to meet with to talk about trying to lessen this financial burden for the Hopgoods.