Better options for treating hypersomnolence
16 November 2020

This year the ASA’s Medicines Sub-Committee has prioritised advocating for better treatment options for people with central disorders of hypersomnolence, such as narcolepsy and idiopathic hypersomnia.

“In Australia we are restricted in the number of medications available to treat disorders of hypersomnolence and often these medications are unsubsidised due to current prescribing restrictions so they are costly for the individual patient. We do not have access to several newer agents which are available overseas so our patients suffer. This goes against current international guidelines for management of central disorders of hypersomnolence,” said the Chair of the ASA Medicines Sub-Committee, Professor Bandana Saini. 

A recent ASA survey of physicians revealed a high level of dissatisfaction with medication treatments currently available in Australia (69% of respondents were dissatisfied or very dissatisfied), and an awareness that more evidence-based treatment options are needed. The survey results have provided a firm foundation for further advocacy. 

“We were able to quote the survey results in a minor submission to the Pharmaceutical Benefits Advisory Committee (PBAC) which sought to change current prescribing regulations for the treatment of narcolepsy. We requested that armodafinil/modafinil be treated as equal first-line treatments alongside dexamphetamine, and streamlining of other requirements to reduce some barriers to changing medications,” said Professor Saini. 

The Pharmaceutical Benefits Advisory Committee considered the minor submission at its meeting in July 2020. While some of the procedural changes were accepted, the main decision around improving access of patients to armodafinil and modafinil was deferred while economic analyses were undertaken by the Department.

“This effort is still a work in progress and we will report back to ASA members when there is further news,” Professor Saini said.

Meanwhile, the Medicines Sub-Committee has made a submission to the Federal parliamentary Inquiry into approval processes for new drugs and novel medical technologies in Australia.

The ASA submission focussed particularly on the lack of availability of suitable first-line drug treatments for narcolepsy in Australia, in contrast to other developed countries. It set out a number of ways to ensure timely access to contemporary treatments to support those living with this debilitating condition. The submission concluded: “Improved alignment with international registration and reimbursement processes will be the key to modernising narcolepsy care in Australia.”  

The Medicines Sub-Committee has recently started work on a systematic review of the scientific literature on wake-promoting agents for narcolepsy focusing on patients with comorbidities. Once published, the review will provide evidence that can be used in further advocacy activities.

“The Medicines Sub-Committee is united in its view that there is an urgent clinical imperative to progress the availability and use of medicines for central disorders of hypersomnolence in Australia. I’d like to thank the committee members – Ksenia Chamula, Sheila Sivam, Sutapa Mukherjee, Simon Frenkel and John Swieca – for their hard work and dedication this year,” Professor Saini concluded.

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