MEDICINAL cannabis has substantially improved a Stirling teenager’s health but the extraordinary cost is putting it out of reach.
Michelle O’Brien said her son Caleb Bhatti’s seizures have reduced from 10 a day to one a week since he started taking Canadian company Tilray’s cannabidiol (CBD) product, a non-psychoactive compound from cannabis.
Caleb (13) was diagnosed with a brain tumour when he was eight months old, followed by an epilepsy diagnosis two months later.
He also has an intellectual disability and the tumour’s position makes it too risky to remove.
Ms O’Brien said Caleb tried 10 different anti-epileptic medications with side effects that included hallucinations and loss of speech, but since taking Tilray the seizures were less frequent, his school attendance improved and he was more interactive.
“The cognitive improvements we saw first,” she said. “After three to four weeks, we started seeing the seizures reduce.”
Though legally prescribed, medicinal cannabis is not approved by the Therapeutic Goods Administration (TGA) and Ms O’Brien pays $423.50 for a 25ml bottle, which lasts Caleb about four days.
A benefactor paid for the initial six months, but Ms O’Brien and her partner now have to cover the costs on a single income.
“I can’t think of any family that could afford it.”
They have sold possessions to raise money for the medication and Ms O’Brien is now reluctantly fundraising online.
“We love our child and want him to have a good life,” she said. “I don’t want him to die at a young age.”
“He’s a gorgeous boy inside and out.”
Sudden unexpected death in epilepsy is a constant worry.
“People say to me, ‘You’re so strong Michelle’, but it’s just a case of having to,” she said.
“We cope by dealing with things as it comes, by not thinking about it.”
She wants medicinal cannabis added to the Pharmaceutical Benefits Scheme (PBS) or for the State Government to subsidise the cost.
Tilray is not on the Australian Therapeutics Goods Register because of a lack of evidence.
Ms O’Brien is urging the government to facilitate studies and trials.
“It’s not a panacea but there is evidence, there is proof,” she said. “The more studies done the better.
“Now the government needs to step up.”
Health Minister Roger Cook said PBS-listed medicines was a Federal Government responsibility.
“I believe it is important and timely for the Commonwealth to consider a more flexible system that expedites affordable access to new and emerging healthcare treatments,” he said.
A Health Department spokeswoman said there was one cannabis-based product in Australia registered with the TGA and though unregistered products needed to meet some minimum quality standards they were “well below the rigorous tests expected of other prescription medicines”.
She said there several trial examining the use of medicinal cannabis underway in Australia and overseas and that the high purchase price was likely a reflection of the limited number of manufacturers, investment costs and current small consumer market.
Any WA doctor can apply for regulatory approval to supply medicinal cannabis to patients where appropriate and all pharmacies are able to dispense it.
To contribute to Caleb’s medication costs, go to bit.ly/2RXjBAA.