Lyn Cleaver watched her son struggle with severe epilepsy and accompanying seizures for years.
After prescribed medications induced psychosis in her beloved son, she turned to an unauthorised drug which the family found incredibly effective.
Ms Cleaver began researching medical cannabis in 2012 after prescribed medications had adverse affects on Jeremy, who is now 26.
“We started him on hemp seeds and then went on to cannabis," Ms Cleaver said.
Since Jeremy started consuming medicinal cannabis in 2014, his partial seizures have “dramatically reduced”.
"When you jump online and you start researching it ... inevitably you find groups, pockets of people, that are in your state or in the country,” Ms Cleaver said.
“[I] met a fellow who makes cannabis tinctures and he said ‘oh, I've got some, do you want me to mail some up?’.
"He sent it up and it sat in the fridge for four or five weeks because I was too petrified to use it."
Jeremy has refractory epilepsy, caused by acute viral encephalitis he had at the age of six, which caused a brain injury and uncontrolled seizures.
Cannabis does not induce psychotic side-effects in Jeremy.
Ms Cleaver continues to experience the occasional pang of fear over growing her medicinal crop at their East Tamar home.
"It used to make me incredibly nervous, now the only thing that triggers a real fear is hearing a police siren or seeing a police car,” she said.
“We know people in Tassie who have been raided, and they're medicinal users."
Ms Cleaver was led to cultivating an at-home crop after supply became unreliable due to factors including seasonal changes and suppliers being raided by police.
Ms Cleaver said advocates and suffering Tasmanians were calling on the state government to release its Controlled Access Scheme details as a matter of urgency.
“Government need to understand what is happening out here on the ground and while they are engaging ‘specialists’ they are not engaging the Tasmanians who are successfully using cannabis now,” Ms Cleaver said.
Ms Cleaver said a regulatory system for compassionate medicine makers, who grow crops to benefit others through treatment supplies, could be beneficial.
“At the end of the day the biggest thing is we need access to lab testing, [if] they're concerned about the safety of our medicine, let's get them tested,” Ms Cleaver said.
She believes that if restrictions on medical cannabis were lifted, her 26-year-old son would have more independence.
"At the moment, we're the only people that can give him his medicine ... support staff can't give him medicine because it's illegal and there's no framework for them to do it," she said.
Cannabis has not completely cured Jeremy.
"It's quality of life that cannabis has given him, he still has seizures but he's far healthier and has a far better quality of life," Ms Cleaver said.
Some of the cannabis Jeremy takes for treatment contains active THC, or the psychoactive compound that makes recreational users high.
But Ms Cleaver said when users can access a broad cannabinoid profile taken from the whole plant, the ‘stoned’ effect is negated.
"But honestly, I've seen Jeremy very stoned on pharmaceuticals, I've seen Jeremy not be able to breathe on pharmaceuticals, I've seen him not be able to walk, but I've never, ever seen him stoned on cannabis," Ms Cleaver said.
Ms Cleaver hopes for compassion toward the medical cannabis community.
“Advocates ask that a register for patients using cannabis be set up, so that people using cannabis therapeutically now are afforded some protection from being targeted by police,” she said.
“So that patients can openly discuss their condition and cannabis medicine with their treating physician.
“A framework that is tiered would be most effective - a pharmaceutical model, a herbalist-dispensary model, and finally a registered authorised ‘home grow’ rights model.”
Health Minister Michael Ferguson said the state government would roll out the Controlled Access Scheme “as soon as practicable this year”.
“Under the scheme, given the highly specialised nature of unregistered products, prescriptions under the CAS will be dispensed through Tasmanian Health Service hospital pharmacies,” Mr Ferguson said.
A state government spokeswoman said the state government had spoken with a large number of stakeholders regarding the scheme.
The federal government recently announced that importation of international medical cannabis would be used to compensate while local supply caught up with demand.
Federal Health Minister Greg Hunt recently announced the first licence being granted for an Australian company to grow and harvest medicinal cannabis.
Victoria, which became the first state to legalise medical cannabis in April 2016, harvested its first crop of medical cannabis last month. The Victorian government has made medical cannabis available to children with severe childhood epilepsy.
Ms Cleaver said she would continue to cultivate cannabis at home, but said “a lot of people” would take advantage of the Tasmanian CAS when it comes into effect.
She said a large portion of Tasmanians were already using medical cannabis.
