By Paul Reynolds, Vice-President, Narcolepsy Network

The biggest news in the medical treatment of narcolepsy continues to be the evolution of what are known as orexin agonists, a new class of pharmaceuticals now in development. The emerging medications were everywhere at SLEEP 2026, a kind of summit meeting for the sleep community.

The Narcolepsy Network team for the event – which was held in mid-June in Baltimore – comprised our newly minted executive director Liz Burgess, along with president Keith Harper and myself.

In reviewing research at the event and talking with numerous experts and sleep providers, we learned a lot about the current state of orexin agonists – as well as worry about access to the drugs after they begin reaching the market late this year and in 2027 and 2028.

Here’s more about what we found out, and what it may mean for those with narcolepsy and other sleep disorders.

Help from orexin agonists may go beyond type 1 narcolepsy

These medications directly target the root biological cause of Narcolepsy Type 1: a severe deficiency of a chemical messenger known as orexin, which helps stabilize wakefulness and regulate transitions between wakefulness and sleep. (Yet, in a welcome development, there’s also evidence that these medications may also help those with Narcolepsy Type 2 and idiopathic hypersomnia, even though those conditions are not rooted in a deficiency of orexin).  

The orexin agonists are an emerging daytime treatment of narcolepsy. Yet other classes of medications have long been used at night to regulate sleep cycles, often in combination with the daytime use of stimulants.

The anticipation for the arrival of orexin agonists has begged a key question, at least for observers like us: Might these new medications promote daytime wakefulness so well that they reduce or even eliminate the need for nighttime sleep medications?

Some of the experts we engaged said more research is needed before they offer an opinion on that question. But more experts said they expected orexin agonists to supplement nighttime medications, including oxybates that are taken once-nightly or twice-nightly, more than eliminate the need for them. Many experts we spoke with expect orexin agonists to complement rather than immediately replace nighttime medications, although longer-term clinical experience will be needed to know how treatment strategies evolve.

This potential double duty raises the prospect of potent new daytime solutions for sleepiness in combination with some nighttime solutions that are effective for many people. Yet it also raises worries about the ability of patients to simultaneously access both agonists and proven nighttime medications.

Even if some doctors will want patients to take both, there’s already concern at the combined cost of the two solutions. Nighttime medications such as sodium oxybates tend to be expensive, and the orexin agonists are also expected to be costly, at least initially.

There’s concern, then, that insurance companies, already paying for an expensive nighttime medication, may balk at covering yet another costly treatment. Some people even fret that patients might be forced to choose one or the other of the two treatment types.

That widespread worry may underlie the increased use in conversation of such terms as “patient access” at SLEEP 2026 compared with past conferences. There seemed to be more concern than usual that the full range of effective treatments may soon be out of reach for many sleep patients, at least for a time.

In addition, SLEEP 2026 yielded further evidence that the care challenges include shortages in local sleep practitioners and testing labs, which are hindering the diagnosis and ongoing treatment of sleep disorders.