Narcolepsy burden especially high for young patients | AMCP Annual 2026

The burden of living with narcolepsy is high, and it starts at a young age, according to Luis Ortiz, M.D., assistant professor of pediatrics at Johns Hopkins School of Medicine, located in Saint Petersburg, Florida.

“The peak incidents of narcolepsy occur at around age 15, and so you have key moments of your life that you're missing out on, whether it's academic or social,” Ortiz said in a recent interview with Managed Healthcare Executive. He added that by the time patients are diagnosed, they may have years of social and emotional baggage, as well as negative consequences for their careers.

“It's really important to hear about the patient's experience, not only for figuring out what medication will work best for them but also in developing the medications,” he said.

Ortiz presented this week at the 2026 annual meeting of the Academy of Managed Care Pharmacy (AMCP) in Nashville, Tennessee. It is being held from April 13-16.

He spoke during a session called, ‘Advancing Patient-Centered Care in Narcolepsy Type 1: Integrating the Latest Evidence, Guidelines, and Treatment Innovations.’