A parliamentary inquiry into approval processes for new drugs and novel medical technologies has again raised the issue of how patients with rare sleep disorders such as narcolepsy are managed in Australia.
A public hearing of the Inquiry heard consumers are frustrated at all stages of the process. For example, they report confusion about why they are largely seeing respiratory physicians for diagnosis of what they perceive to be a neurological disease.
“For narcolepsy and IH [idiopathic hypersomnia], we all see respiratory specialists. It’s a neurological disease. It’s nothing to do with respiratory. So we are stuck seeing people who actually know limited [sic] about the brain, but that is where we are sent because that is what is standard here,” Narcolepsy Australia president Melissa Jose told the hearing.
And access to effective medicines, the focus of the Inquiry, was problematic at different levels.
“…in order for doctors to prescribe us these medications they have to essentially fabricate the truth and give us a narcolepsy or ADHD diagnosis, depending on the medication being accessed. This is problematic, it is untrue, it is unethical but it is a widely accepted practice, as they have no other treatment to offer us,” said Amanda Vernon, who has idiopathic hypersomnia and a teenage daughter with the condition.
There was also frustration that more effective medications such as sodium oxybate (Xyrem) were not available in Australia.
Many of the issues raised at the Inquiry have previously been recognised in Bedtime Reading, the 2019 report from the Parliamentary Inquiry into Sleep Health Awareness in Australia.
Among its recommendations were:
- investigate options to separate the existing ‘Respiratory and Sleep Medicine’ speciality into independent ‘Respiratory’ and ‘Sleep Medicine’ specialities under the Australian Health Practitioners Regulation Agency framework
- fund research into the prevalence, causes, and mechanisms of rare or not well understood sleep disorders, including narcolepsy and idiopathic hypersomnia
- make a submission for the listing or registration of sodium oxybate under the Orphan Drug Program.
Dr Chris Seton, a paediatric and adolescent sleep physician at the Westmead Children’s Hospital and the Woolcock Institute of Medical Research, told the limbic he understood the level of frustration by people living with the conditions.
“Sleep is categorised as a subgroup of respiratory medicine. That’s how it started. Sleep medicine was an annexe of respiratory medicine and there are still some dinosaurs around who think that sleep is respiratory medicine.”
“Our belief is that sleep medicine should be multidisciplinary. In my practice, 40% of the young people I see have a respiratory issue but 60% do not.”
Dr Seton, who has established an adolescent clinic at the Woolcock Institute, said patients typically benefit from multiple inputs. That included sleep psychologists to address mood disorders, allergy specialists to manage airway blockage and snoring, and neurologists where patients might need other investigations such as 24-hour monitoring for seizures.
“The multidisciplinary approach is the way to go where you have different specialists under one roof and you interact. It saves people running around Sydney seeing different specialists who may not be appropriate.”
Access to medicines