25 October 2023

Australia’s healthcare system is letting down patients suffering from sleep disorders resulting in debilitating sleepiness, according to new research just published in the Royal Australasian College of Physicians’ (RACP) Internal Medicine Journal.

The study looked at 88 patients aged 16 years and older who attended one of two Australian sleep centres located in NSW and Queensland for the diagnosis and management of hypersomnias of central origin. These include disorders such as idiopathic hypersomnia and narcolepsy, a rare sleep condition that can begins in early adolescence.

Co-author and Sleep Medicine Physician Dr Sheila Sivam says, “There are many Australians living with narcolepsy which means they are prone to falling asleep while going about their daily lives.

“It is a serious disorder that goes far beyond the type of fatigue the rest of us experience after a few bad nights sleep.

“Even with current medications available, patients can still struggle to do simple, daily tasks that we take for granted.  

“Unfortunately, Australia is not offering world-class care to patients with narcolepsy and idiopathic hypersomnia. Patients are often relying on outdated albeit cheaper stimulant medications that are not prescribed as a first line of treatment in other developed countries such as the EU and North America.”

The study found treatment options for Australian patients lagged comparable nations, often leaving patients with access only to sub-optimal treatment or an out-of-pocket cost of approximately $20,000 per year.

“The treatment for narcolepsy and idiopathic hypersomnia in Australia is very behind the rest of the world,” Dr Sivam said.

“Australia does not have a national data registry that will help identify exactly how many people are suffering from hypersomnias of central origin. This means we don’t know exactly how many people are impacted by narcolepsy and other associated disorders, there is very little incentive for the marketisation of diverse treatments. We can only rely on global prevalence rates of narcolepsy which indicate between 25-50 cases per 100,000.”

This means there could be up to 12,000 Australians living with narcolepsy.

“We have a lot of patients who are struggling with these debilitating diseases, and we are not providing them with the best medicines out there to manage their conditions.

“We know there are a slew of medicines out there that can treat these sleep disorders. Some have the capacity to completely turn a patient’s life around. It’s night and day, and the improvement to their mental, physical and emotional wellbeing cannot be quantified.

“However, it very difficult for those patients to access the type of medications they need to live a normal life.”