Over the years, both men have been diagnosed with everything from depression to narcolepsy to insomnia. They both have tried a host of sleeping pills, to no avail.
There are no medications approved by the US Food and Drug Administration to treat non-24. Some people have found relief from synthetic supplements of the hormone melatonin, which sends a “nighttime” signal to the body clock. But the treatment doesn’t work for everyone.
The ongoing clinical trial is testing a candidate drug called tasimelteon that scientists hope will be more effective in treating non-24.
The drug — developed by Washington, D.C.-based Vanda Pharmaceuticals, which is paying for the study — has a similar structure to melatonin. Lockley said that if approved, it will be more precisely dosed and administered than melatonin, which, as a dietary supplement, is not regulated by the FDA.
Harvard scientist J. Woodland Hastings, a pioneer in studying biological rhythms who is not involved in the trial, noted the importance of understanding exactly how this drug is different from melatonin, beyond being patentable and thus potentially profitable for Vanda.
Yet Hastings acknowledged the benefit that a prescription drug for non-24 could have in the medical world. “I do think a physician would be reluctant to prescribe melatonin without some kind of FDA regulation,” he said.
The development of an effective treatment could mean more than a good night’s sleep for those with non-24. According to Lockley, the disorder may interfere with the body’s regulation of metabolism, mood, and cognition.
“If you imagine that all of the organs in the body are members of an orchestra playing their own tunes, the master body clock is the conductor, synchronizing everyone to play in time,” Lockley said.
Berrier’s wife, Elaine, said non-24 has been a part of their entire 39 years of married life. Elaine, 60, is sighted, but as a retired nurse, she knows the toll of working an overnight shift, which has similar effects on a person’s body. She worries about how decades of similar fatigue have affected her husband.
“He often only gets three hours of sleep a night — I know that can shorten a life,” she said.
For Pierce, sleep loss has caused longer healing times. In the mid-2000s, he endured several neurological treatments to help the region of his brain that controls balance. He said that during his recuperation wounds took longer than normal to mend.
Both men are now taking tasimelteon daily, and have noticed improvement. They said they plan to use the drug if it hits the market, though Pierce wonders how he would afford the drug if it’s expensive.
The drug hasn’t worked perfectly for Berrier, but he now is more likely to have one night of bad sleep rather than weeks.
Last year, while on the treatment, Pierce became the first blind person (and his pup, The Mighty Quinn, the first guide dog) to climb all 48 of the 4,000-foot peaks in New Hampshire’s White Mountains in a single winter.
He said he would have attempted the winter climbs regardless, but the extra sleep made the ascents that much swifter.
Alyssa A. Botelho can bereached at email@example.com.