Cost of prescription medicinal cannabis too expensive for most

Medicinal cannabis has been legalised for four years, yet the special access scheme is plagued by red tape. Now cost is cited as the main reason the black market still thrives with some parents actively breaking the law.

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Patients are still being forced to break the law by buying medicinal cannabis on the black market because it is cheaper than the legal product available on prescription.

The Senate inquiry into barriers to patient access to medicinal cannabis has heard dozens of submissions citing the cost of legal access to the drug is prohibitive.

Medicinal cannabis was legalised in February 2016 but access has been hampered by red tape and cost.

Lucy Haslam, whose dying son Dan sparked the push for legal access to medicinal cannabis in 2014, said even though approval for prescriptions are up ten-fold in the past year, most find the legal product too expensive.

“That’s it in a nutshell, for kids with epilepsy they are looking around $40,000-plus annually,” she said.

Kaitlyn Lambert eight, has severe epilepsy, with her brother Cole, nine, Picture: Sue Graham

“Some are paying $50 a day and the imported products the government has made available through the special access scheme are more expensive than the black market, so people keep gravitating to the black market. It is easier to get.

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“Every day children, mums, dads, grandparents, professionals, police, judges and family members of politicians are breaking bad laws because the system is not fit for purpose.”

Central Coast man Michael Lambert, whose eight-year-old daughter Katelyn has a severe form of epilepsy known as Dravet Syndrome, was arrested and charged for growing and supplying cannabis oil for his daughter’s condition in 2017.

He was found guilty but no conviction was recorded.

It is the only drug that has stopped her regular seizures and has saved her life.

Since medicinal cannabis became legal, he attempted to source it through doctors but has reverted to breaking the law to obtain it.

“We got one script and it was $585 a bottle that would last two to four days, which is unaffordable for most people. So we are now importing it illegally from overseas from a trusted source.

Lucy Haslam campaigned to legalise medical cannabis after her son Dan died with terminal bowel cancer. Picture: Jonathan Ng

“The whole system does not work. It was $500 for the appointment for the cannabis access clinic and the stuff they sell (on prescription) is hideously expensive.”

Mr Lambert’s father Barry Lambert set up the Lambert Initiative at Sydney University which has tested black market cannabis oil and found much of it was contaminated with the psychoactive tetrahydrocannabinol (THC) and low concentrations of the cannabidiol (CBD), which is the desired compound for epilepsy.

Joylene Donovan’s 16-year-old daughter Ava also has Dravet Syndrome and has also found the legal product too expensive.

“The quote I got from the director of pharmacy was it cost $1000 per kilo per year, so our daughter weighs 93kg so approximately $90,000 per year to use this product,” she said.

“Most people with a sick child only have one income and we can’t fund it, it’s not doable and Ava is still not deemed severe enough to be on the compassionate program.”

Michael Lambert with children Cole, nine, and Kaitlyn, eight, who has severe epilepsy, Picture: Sue Graham

In desperation, Mrs Donovan also obtained black market cannabis oil but the quality was poor.

“I have tried the black market and initially we had some good stuff, but then it was too inconsistent, I didn’t really know what I was giving her,” she said.

The Australian Pain Management Association submission outlined a recent survey of those in chronic pain and their experiences accessing medicinal cannabis.

Of the 76 respondents, almost half said they had attempted to be prescribed medicinal cannabis through the special access scheme but only 29 per cent were successful in obtaining medicinal cannabis.

“More than half (57 per cent) couldn’t find a GP to prescribe medicinal cannabis at all. Affording the prescribed medicinal cannabis treatments was a big issue for respondents,” APMA said.

“48 per cent said they couldn’t afford the medicinal cannabis and a further 25 per cent stated that they could afford it at the moment but it was a struggle.”

The inquiry is expected to hand down its findings on February 26.

Originally published as Cost of prescription medicinal cannabis too expensive for most