‘He can die’: Hospital delay threatens 11-year-old’s access to ‘crucial’ medical cannabis medication
A Perth mother fears her son’s life is at risk after a hospital slip-up led to the approval of his “life-changing” cannabis oil prescription not being renewed.
Suzanne Chellen, whose 11-year-old son has a debilitating form of epilepsy, went to Perth Children’s Hospital to fill in his prescription on Tuesday where she was told by staff the Therapeutic Goods Administration approval for the medication had lapsed on August 20 and was yet to be renewed.
A syringe loaded with a dose of CBD oil. CREDIT: AP Mrs Chellen’s son, whose name has been withheld to protect his privacy, has been on cannabis oil for the past two years after struggling with up to 17 seizures a day that often left him bed-bound for weeks at a time.
Under current regulations, patients prescribed cannabis oil must have their TGA approval renewed every 12 months by submitting an application to the agency. In Mrs Chellen’s case, that was done by her son’s neurologist. Perth Children’s Hospital, which handles a small number of patients taking cannabis oil, is responsible for keeping on top of the renewals to ensure no lapses occur and patients are forced to go without the medication.
Suzanne Chellen’s son has been taking cannabis oil for two years. On Tuesday, Mrs Chellen was told the neurology team would apply that day, but when she sent an email the next morning to confirm it had been submitted she was told no action had been taken.
“My child’s got two days’ worth of medicine left and if he doesn’t have it, he’s going to have multiple seizures, and he can die,” she told WAtoday.
“I’m just furious. I’m just dumbfounded.”
Applications to the administrator can take 48 hours to process, which means a delay in getting approval could leave her son without medication.
Mrs Chellen said the hospital had tried to get her son off the treatment in the past, arguing it wasn’t making enough of a difference to his health to warrant its high cost.
She admitted her son had continued to show a decline in his cognitive abilities but had gone from needing to be hospitalised every third day and losing the ability to walk, to running, talking, laughing, and playing.
Mrs Chellen managed to keep her son on cannabis oil after presenting a letter from a leading Melbourne neurologist backing the treatment, but now fears the hospital is trying to withhold it again in a bid to reduce expenses, a claim that was denied by a hospital spokeswoman.
“I’m really on edge ... because ultimately if we don’t get this script tomorrow, I’m going to have to bring him down there and tell them to admit him into the hospital,” she said on Wednesday. “To go and take off cold like that, with no weaning process, no replacement, it’s really endangering his life, and I’m not going to do that at home and watch him suffer.”
It is not the first time a hospital bungle has gotten in the way of her son’s access to treatment.
Mrs Chellen said it took the hospital seven weeks to notify them of the initial TGA approval for her son’s treatment after it had been granted, only to find out they had prescribed the wrong strength.
Later, the pharmacy at the hospital, where her son was a patient at the time, would not allow her to buy the medicine without prior approval from the hospital board, leaving her with no other option but to find another pharmacy willing to order it in. A Child and Adolescent Health Service spokeswoman said PCH hadn’t stopped filing applications to renew cannabis oil prescriptions, and medication costs – which vary from patient to patient – were not considered in decisions to renew TGA approval.
At the time of writing, the TGA approval application for Mrs Challen’s son was still pending.