Jordon Kotarac with his daughter Juliette, whose seizures were not halted by medicinal cannabis treatment. (Supplied: Jordan Kotarac)
The father of a five-year-old girl who suffers from severe seizures says he supports the Victorian Government’s medicinal cannabis program, even though it did not stop his daughter’s fits.
It was revealed this week that 13 out of 34 children have left the Government’s subsidised medicinal cannabis program since it began in March last year.
The Opposition’s health spokesperson, Mary Wooldridge, said the drop-outs are proof the policy — which the Government says costs around $35,000 per child — has not delivered good value for Victorian taxpayers.
Geelong father Jordan Kotarac disagrees.
His daughter Juliette suffers from a severe neurological condition, which requires full-time care and causes multiple seizures a day.
“When she wakes up she’ll have an obvious seizure where she’ll drop her head, have lip contractions … which last up to about 10 or 15 minutes in duration,” Mr Kotarac said.
He said the family tried around a dozen different medications, all of which had been ineffective, before signing up to the program in April last year.
By October, Juliette had left the scheme after the drug failed to stop her seizures and resulted in negative side effects.
“She lost a bit of her appetite and it was quite hard to feed her at that stage,” Mr Kotarac said.
But he does not regard the scheme as a failure.
“It may not help her, but we were just very glad to be given the opportunity to actually try something different,” he said.
“There’s always two sides to a debate.
“We’d been on about 10 or 12 medications, none of those medications have been effective for us, and you can still access those through the PBS (Pharmaceutical Benefits Scheme) and taxpayers are still paying for those as well.
“The way I look at it, it’s another form of medication that people should have the right to try, particularly in situations such as we’ve been through.”
Excluded family calls for expansion
Meanwhile, another Geelong father whose six-year-old daughter’s life is “dictated by seizures” is calling for the scheme to be expanded.
Geelong paramedic Rob Humphris said his daughter Cambrie had suffered life-threatening seizures from birth, some lasting up to an hour.
“They can happen any time of the day or night,” he said.
“She often gets her seizures when she’s dozing off to sleep. That means that pretty much she’s fighting seizures to get rest.
The Humphris family has cycled through 15 different medications to treat Cambrie’s epilepsy, but none have been able to stop the regular seizures.
“Pretty much for the last few years [we’ve] been told Cambrie has now tried everything that is possibly available for her seizures, and this is as good as it’ll get,” he said.
Mr Humphris had hoped to get his daughter access to the State Government’s medicinal cannabis program last year, but was knocked back due to a cap on numbers.
He said it’s “frustrating” that funding decisions determine how many Victorian patients with severe epilepsy got access and how many missed out on treatment, which costs around $120,000 each year without a subsidy.
“I think that the Government really should be allowing the funding for something that is for a life-threatening condition and leave it up to the medicinal experts, [who] can also weigh up the financial cost of these things, as they do with many other drugs that cost quite a lot,” he said.
Results ‘consistent’ with previous research
Associate Professor Michael Fahey, the head of paediatric neurology at the Monash Medical Centre, said the numbers reported by the program are in line with medicinal expectations based on other international research into medicinal cannabis.
“Remember that to see the medicine in the first place you have to have failed at least four medications, you have to have daily seizures or be admitted to hospital regularly,” said Dr Fahey, who has been part of the medicinal trial.
“These are children who are otherwise not going to respond to a single therapy, and they’re desperate, and I think that what’s happening reflects reality.
“I think that any cost is not in comparison to nothing — these children are on four or five other medications [which] are often expensive.”
Health Minister Jill Hennessy said the results showed that around a third of participants had seen a significant improvement in the rate of seizures during the trial.
“To improve the lives of a third of those children is an investment that our Government believes is a worthy one,” she said.