A ‘life changing’ medicinal cannabis drug that stopped a boy from suffering up to 30 epilepsy seizures a week will be subsidised.
A “life changing” medicinal cannabis drug that stopped a boy from suffering up to 30 epilepsy seizures a week will be subsidised by the federal government.
Epidyolex cannabidiol will be listed on the Pharmaceutical Benefits Scheme (PBS) from May 1 for patients with the rare form of epilepsy known as Dravet Syndrome, which has a 17 per cent mortality rate by the time suffers reach the age of 20.
The PBS listing will drop the cost from about $24,000 a year to just $41.30 per script.
Five-year-old Paul-Anthony Zamanis went from having 20 to 30 seizures a week to almost none and is a more energetic and “happier” kid after starting on the drug more than a year ago, his father George said.
Mr Zamanis said he and his wife “tried everything” to save their son, and were lucky enough to get access to a trial scheme and started Paul-Anthony on the pharmaceutical grade cannabis oil as a “last resort”, in combination with four other medicines, to treat his seizures.
Now nearly six, Paul-Anthony has only had relapses of seizures during bouts of the flu when his temperature has been elevated.
“Ever since the oil, his brain has started developing a lot more,” Mr Zamanis said.
“He’s saying a lot more words, he’s energetic, more happy. He’s just a different kid basically.”
Mr Zamanis said PBS listing would be a “huge help” to other families who had not been able to access subsidised schemes.
“Money is not an easy thing when you’re dealing with a kid constantly having seizures and you’re trying to do whatever it takes to stop them and save their life,” he said.
“This is huge; It gives them a better outlook, gives them a chance to live a normal life.”
The oil does not contain THC, which is the psychoactive component of cannabis, and is the only cannabis drug considered pharmaceutical grade, having been through rigorous trials.
Neurologist at the University of Melbourne and Austin Hospital Professor Ingrid Scheffer said she was “particularly delighted” the PBS listing would make the drug available to adults suffering Dravet syndrome.
“About 43 per cent of patients with Dravet Syndrome had a 50 per cent seizure reduction … and so being able to have it on the PBS is fantastic for families,” she said.
Prof Scheffer said children with Dravet Syndrome often develop normally until they are about one or two years old but “usually have a poor outcome” after that.
“From severe intellectual disability in about 50 per cent of patients to more moderate or mild cases, they’re very rarely (not impaired),” she said.
Health Minister Greg Hunt said it was estimated about 116 patients would benefit each year from the “historic” PBS listing of the cannabis drug.