Narcolepsy type 1 drives 5-fold higher costs in first year after diagnosis

For people living with narcolepsy type 1 (NT1), the daily struggle to stay awake is only part of the burden. The lifelong neurological disorder, sometimes called narcolepsy with cataplexy, disrupts the brain’s ability to regulate sleep-wake cycles. Beyond its personal toll, a new diagnosis also places a heavy burden on healthcare resources, according to a poster presented at AMCP Nexus 2026 by researchers from Takeda and RTI Health Solutions.

The researchers found that people newly diagnosed with NT1 incurred total healthcare costs 5.5 times higher than matched controls in the first year after diagnosis, despite the availability of treatment.

How NT1 affects patients

NT1 causes excessive daytime sleepiness, an overwhelming need to sleep during the day even after a full night’s rest. It also causes cataplexy: sudden, temporary episodes of muscle weakness often triggered by strong emotions, which can strike at any time. Other symptoms can include sleep-related hallucinations, sleep paralysis, brain fog and “sleep attacks,” in which patients fall asleep at unwanted times or places.

According to the Hypersomnia Foundation, [prevalence estimate — confirm against source]. NT1 develops when the brain loses the neurons that produce orexin, a chemical that helps keep people awake. That loss is thought to result from an autoimmune process, in which the immune system mistakenly attacks the body’s own cells.

The study also found that NT1 rarely occurs alone. Several other conditions were far more common among people with NT1 than among controls:

• Sleep apnea: 34% vs. 4% (obstructive sleep apnea specifically: 31% vs. 4%)
• Anxiety disorders: 46% vs. 17%
• Depression: 35% vs. 12%
• Obesity: 23% vs. 10%
• Cardiovascular disease: 18% vs. 8%

How NT1 affects health systems

The observational study included 580 adults newly diagnosed with NT1 and 1,160 matched controls. Both groups were 72% female, with a median age of 33 for people with NT1 and 34 for controls.

To examine the burden of the disease, the researchers analyzed insurance claims from the Merative MarketScan commercial and Medicare supplemental databases from January 2017 through January 2025. They matched each newly diagnosed adult with two people without the condition who had a similar age, the same sex and the same type of insurance. They then compared healthcare use and costs during the year after diagnosis, adjusting for differences in age, overall health, year of diagnosis, health plan type and region.

In that first year, patients with NT1 averaged about 19 office visits vs. seven for controls, and about four outpatient hospital visits vs. one. They also had about twice as many emergency department visits, although hospital stays were rare in both groups.

Costs were higher across the board for people with NT1:

• Total costs (medical plus pharmacy): 5.5 times higher
• Pharmacy costs: 9.8 times higher
• Outpatient visit costs: 3.7 times higher
• Total medical costs: 3 times higher
• Office visit costs: 3 times higher
• ED visit costs: 2.1 times higher

The findings, which were funded by Takeda, arrive as the NT1 treatment landscape shifts. In August, the FDA approved Takeda’s oveporexton (Orzeyful), the first orexin receptor agonist for the condition. Takeda says that unlike earlier therapies, which manage symptoms, the drug targets the underlying cause of the disease. For payers, the study’s authors said the results have “clear relevance for clinical and policy decision-making.”