The road to a good night’s sleep is expensive and frustrating
How Much Do I Know About Insomnia? Miranda Can’t Tell Us. A Case Study of SleepioRx: A Digital Health Platform for Self-Care for Adults and Children
Miranda cannot remember a time in her life when she did not have insomnia. The 23 year old who asked for her last name to be kept out of her mouth was a child when she began to struggle with sleep. It is only gotten worse as she gets older. She takes a number of drugs each night and is usually unable to fall asleep until the early hours of the morning. “I can’t get up and be functional until halfway through the day,” she says. She had to drop out of university because she couldn’t attend classes, and she can’t hold down a job. Her insomnia exacerbates other medical conditions as well, including migraines and the pain condition fibromyalgia. She says it’s hugely disabling. It affects everything.
My trials and troubles with insomnia have benefited from a lot of privilege. My insurance covers my appointments with the PA, and I have found a supportive one. DORA drugs are not available everywhere, but I live in a country where they are. and I have enough disposable income to pay hundreds of dollars in the interest of self-care. I also have a level of education, and a job as a science journalist, that allows me to access and comprehend the latest health-care findings, and speak directly with scientists at the forefront of research. I can only imagine the collective exhaustion and frustration of the hundreds of millions of people around the world who are not in my position, and who are struggling on their own to get a good night’s sleep.
There has been a slow uptake of physicians. If that isn’t successful you see a therapist, he says, as he imagined a world where digital care is your first stop.
A few companies and health systems, including the US Department of Veterans Affairs and the Cleveland Clinic in Ohio, have also created or are developing digital platforms for delivering CBT-I. These apps take users through regimens that are tailored to their symptoms. SleepioRx, for example, is a 90-day digital programme that has been evaluated in more than two dozen clinical trials and has showed efficacy as high as 76%. This includes helping people to fall asleep faster, sleep better throughout the night and feel better the next day. In August 2024, the programme, developed by Big Health in San Francisco, California, received FDA clearance. The two approaches were found to be equally effective in a meta-analysis of 15 studies.
Mignot was studying narcolepsy, a chronic disorder that affects sleep cycles, and helped pave the way to the latest methods of treating insomnia. He found out that dogs with narcolepsy have a genetic abnormality in one of the two neurotransmitters used to regulate appetite. People with narcoleen have a Lack of Orexin, which supports their main job: promoting wakefulness. If drugs could be developed to counteract insomnia, it would make people feel more well-adjusted for a night.
The drug cannabis is used for many conditions, including sleeplessness. Miranda, for example, supplements her nightly pharmaceutical regimen with a cannabis tincture that contains a few of the plant’s 100-plus cannabinoids (she lives in a state where cannabis use is legal). She says it is a key player in her sleep-medication arsenal.
Idorsia, which produces DORA drugs, has the only information about daytime functioning for Daridorexant. In clinical trials4, Idorsia showed that, compared with those given a placebo, people who received daridorexant experienced significant improvements in daytime insomnia symptoms the following day. Data from the FDA’s approvals database shows that daridorexant has the lowest fatigue and drowsiness scores, possibly because it leaves the body the quickest.
The main drawback to DORA drugs, Buysse says, is not medical but financial: their high cost keeps them out of reach of many people who could benefit from them. In order for the patients to receive one of the drugs, Buysse says they will have to go through trials of several other drugs. DORA drugs are also available only in a few countries, so far.
How much do Benzodiazepines and Z-drugs really help me with chronic insomnia? (How much do I really need to do?)
The next line of defence is pharmacological interventions. Benzodiazepines and a class of medicines called Z-drugs, which include zolpidem (Ambien), are among the most prescribed insomnia medications. These sedative hypnotics enhance the effects of the neurotransmitter GABA, thereby dampening brain activity. They also make you less anxious. But they can create a hangover effect and increase the risk of falls in older people. These drugs can cause dependency and have the potential for misuse. Some studies have shown that long-term use of Z-drugs and benzodiazepines can lead to increased risk of death.
CBT-I also doesn’t work for everyone. Miranda has only gotten limited success with conventional talking therapy that she tried for over a decade. “It only helps so much,” she says.
In the United States, about 12% of adults have been diagnosed with chronic insomnia — when a person struggles to sleep for more than three nights each week for at least three months, and experiences daytime distress as a result. Research suggests that the worldwide figure is 10–30%. It creates a vicious cycle with other conditions, which can include chronic pain, depression and anxiety.
I have been taking Belsomra on and off for a month. I fall asleep quickly and soundly and wake up feeling rested and clear-headed when it works well. About one-quarter of the time, however, my anxiety manages to cut through the medication and I struggle to fall asleep. I was told by my PA to double my dose by taking two tablets each night. But I haven’t tried this yet, because I’m aware that each pill I pop before bed is about the same price as ordering a fancy cocktail.
A nightmare happened to me after the COVID-19 pandemic: When I was unable to fall asleep, I had to stop taking Belsomra
It shouldn’t be like this. Medical professionals should be responsible for making sure their patients get the care they need, not insurance companies who are focused on making a profit at the expense of their clients. If the system is not changed, millions of people will continue to use the same path that I was forced onto, and resort to drugs that may have harmful long-term effects.
I never had issues with sleep until the COVID-19 pandemic. A couple of months into lockdown in 2020, I found myself unable to fall or stay asleep. I was worried for a long time, and the more I slept, the more anxious I became. I was exhausted by this vicious cycle. I became depressed after a few months. It was time to get professional help.
I was happy to give it more time. I woke up from a nightmare one night and felt something crawl through my hair. Then, I saw a flash of light, as though someone was standing over me taking a photograph. I realized that these were visions of sleep that happened during the transitions from sleep to wakefulness. Nothing like this had ever happened to me before, and the vividness of the experience was extremely disconcerting. The next day, I found out that buspirone can cause disturbed sleep. I was told by my PA to stop the drug.
It took almost three weeks for me to receive the prescription, and my insurance would not cover it. There are no generic drugs for DORA. Thirty daily tablets of Belsomra was going to cost me an astronomical US$500. I was desperate to get some sleep and my pharmacist was able to find a coupon that would knock $150 off the bill. I sucked it up and paid.
In clinical trials, Idorsia showed that compared with people given a placebo, people who received daridorexant experienced significant improvements in daytime insomnia symptoms the following day. The main drawback to DOR drugs is not medical but financial: Their high cost keeps them out of reach for many people who could benefit from them, Buysse said.