The Cost of Narcolepsy

If you have narcolepsy, you can take comfort in the fact that the chronic sleep disorder is treatable. Although there's no cure, you can manage narcolepsy through therapy, medication, and lifestyle adjustments. That treatment and management may carry a steep financial price. But you can take steps to hold those costs down.

One study pegs the average cost for medical treatment of narcolepsy at $11,702 a year per patient, including:

• Medication
• Hospital care
• Doctor visits
• Other outpatient services

You might pay more or less than that. And your health insurance may cover most expenses.

But insurance coverage varies. For example, Medicare Part B pays for a diagnostic sleep study only for sleep apnea, not for narcolepsy. And insurance deductibles, copays, and coinsurance can add up.

Your Initial Diagnosis

Your primary care doctor may diagnose your narcolepsy during an office visit or at your annual physical. Your doctor will do a detailed medical and sleep history and find out what medications you’re taking.

If you have private insurance that covers a physical as preventive care, the doctor visit may cost you nothing. Medicaid programs also may cover a checkup at little or no cost, depending on your home state’s policies. But if you're uninsured or have Medicare (which doesn't pay for annual physicals), a primary care doctor’s visit in the U.S. typically costs $80 to $20.

Next, your primary care doctor may refer you to a sleep specialist called a somnologist.

Tip: The American Academy of Sleep Medicine (AASM) has an online database of sleep specialists you can search by locality. Check first with your health insurer to make sure a facility and its doctors are in-network. A consultation visit typically costs $150 to $300 before insurance.

The sleep specialist may ask you to keep a detailed log of your sleep patterns for a week or two. Or you may wear a device called an actigraph, which measures your active and resting periods. Then, you may be asked to take part in one or both of two sleep tests:

1. A polysomnogram, or PSG. This is an overnight test at a sleep center. Monitors measure how fast you fall asleep and for how long, how often your sleep is interrupted, and your vital signs. Online research shows that PSGs cost from $1,000 to $2,000 per night. Private insurers and Medicare cover most of that. Tips: Check ahead of time to see if you need meet certain conditions, such as having particular symptoms, before your health plan will cover the PSG. If you don’t have insurance, the AASM has a web page listing organizations that offer financial assistance.
2. A multiple sleep latency test, or MSLT. This test is often done during the day after a PSG test. You take several short naps while monitors measure how quickly you fall asleep and how fast you enter REM sleep, when you have vivid dreams. An MSLT can be done in a hospital or sleep center. It usually costs from $600 to $2,200.