Katherine Cooper is reaching the end of her tether with ‘red tape’ pricing her out of a drug her child needs

The Mount Gambier mum of a seriously ill child says she has considered illegally sourcing a life-changing drug after being priced out of legal alternatives.

A mum desperately trying to treat her daughters severe epilepsy has considered illegally buying cannabis with upfront costs pushing legal alternatives out of reach.

Katherine Cooper’s 12-year-old daughter Ella has Jeavons Syndrome and Glut1 epilepsy, meaning she experiences hundreds of daily seizures.

If the Mount Gambier woman buys the drug illegally she faces being charged by police and potential jail.

The Mount Gambier mum slammed the “red tape” preventing her from accessing cannabidiol (CBD) treatments on the pharmaceutical benefit scheme.

Ella was three months old when she experienced her first seizure.

Ella has hundreds of daily seizures due to her severe epilepsy. Picture: Arj Ganesan

Ella’s condition was briefly under control when she took part in a cannabis drug trial in Melbourne.

However, the trial ended and the drug did not get government approval.

During the trial, Ella found going to school and learning easier as she was getting more sleep.

Ella said she found it “hard to concentrate”.

“I feel like going to sleep on my (school) desk,” Ella said.

Mrs Cooper said the trial results spoke for themselves.

“She had a 30 per cent reduction in her seizures - you could see the darkness under her eyes disappear,” Mrs Cooper said.

Currently Ella takes four anti-epileptic medications and 1ml of compounded CBD.

Mrs Cooper said the dosage was insufficient to manage Ella’s condition.

Katherine Cooper is fighting to gain greater access to medical cannabis to help manage her daughters epilepsy. Picture: Arj Ganesan

Mrs Cooper said being unable to help her daughter was “awful”.

With the cost of enough legal cannabis out of reach Mrs Cooper and her husband have had several conversations about buying cannabis illegally.

Ella’s CBD treatment alone cost $196 every 21 days, with the minimum increase seeing the price shoot up to nearly $400.

“You want to be able to give your child everything - you’ll do anything to give it to them,” Mrs Cooper said.

Australian Medicinal Cannabis Association co-founder Lucy Haslam said this was not an uncommon problem for parents, especially since children often required higher dosages for treatments to be effective.

“The problem with pricing isn’t going to go away anytime soon,” Mrs Haslam said.

“I know suppliers who are looking after tens of thousands if not hundreds of thousands of patients illicitly.”

Chief executive of medicinal cannabis research company LeafCann, Dr Jaroslav Boublik, said PBS priced products were only applicable for certain types of epilepsy conditions.

Dr Boublik said most medical cannabis products were safe, but had not gone through the “long” and “expensive” full regulation process to be listed on the PBS.

Health Minister Stephen Wade said the government wanted South Australian children with epilepsy to have the best and safest treatments available.

“The Government has met with the pharmaceutical industry on the potential for clinical trials to assess opportunities to use medicinal cannabis to treat other severe forms of epilepsy,” Mr Wade said.

A police spokesperson warned people against illegally purchasing cannabis to treat medical conditions.

“If found in possession of cannabis you may be issued a expiation notice or face court, and the substance will be seized by police,” the spokesperson said.