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Oliver Winn reports on developments overseas in improving access to treatment for insomnia.

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Misdiagnosis, countless consultants, and up to a decade in the dark.  That’s the reality for many Australians seeking a narcolepsy diagnosis.

But that’s only half the battle, as accessing treatment can be a waking nightmare.  Consultant Jac Tomlins is no stranger to managing the symptoms.

“I’ve been able to manage it with carefully controlled, low doses,” Tomlins told SYN News, “and that’s made the difference between living a full life and just surviving.”

First-line treatments for narcolepsy include stimulants and wakefulness promoters, treating symptoms but not addressing poor sleep quality.

But that’s not the case with Xyrem, a medication produced by Jazz Pharmaceuticals and used by patients like Tomlins.

The problem?  it’s $1,500 for a month’s supply — earning Jazz Pharmaceuticals over a $1 billion in 2021.

“Xyrem is a life-changing medication for narcolepsy,” Tomlins said, “but almost no one in Australia can afford it.”

“A generic version available here would have a huge impact on narcolepsy sufferers.”

Competing firm Hikma took the first step toward this in 2010, when it sought regulator approval to sell a generic alternative.

Jazz Pharmaceuticals took Hikma to court over patent infringement, but the firms settled the case weeks before a 2017 trial date.

The settlement granted Hikma the right to market its alternative from this year, news Sleep Health Foundation CEO Moira Junge has welcomed.

“Well I’m hoping that the recent announcement that Hikma Pharmaceuticals has launched an authorised generic of Xyrem in the U.S. is perhaps good news for us here in Australia, I’d imagine,” said Junge.

But while treatment may be more accessible overseas, that’s not necessarily the case locally.

Xyrem isn’t registered in Australia, meaning it must be imported and isn’t subsidised by the Pharmaceutical Benefits Scheme.

But Junge is optimistic people with narcolepsy may still get some benefit from more competition in this space.

“I mean usually an approved generic drug means the cost drops,” she said, “so this is obviously very promising for the Australian public.”

Though a Xyrem generic is a step closer to better accessibility, narcoleptics still struggle to access affordable, effective treatment.

For more discussion of this story, listen to this week’s episode of Minds in Tune.