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The Cost of Narcolepsy

Medically Reviewed by Neha Pathak, MD on July 08, 2021

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 $100 to $200.

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.

Your Medications

If you're diagnosed with narcolepsy, your doctor may prescribe one or more drugs, including:

  • Stimulants that help you stay awake during the day. These don’t treat the sudden loss of muscle control (cataplexy) that can accompany narcolepsy. These stimulants include:
    • Armodafinil (Nuvigil). The low online price is $22.95 (meaning a typical 30% insurance copay would be $6.89). This price, and most of those that follow, are for a standard 30-day supply.
    • Modafinil (Provigil). It can be found online with a digital coupon also for as little as $22.95 ($6.89 copay).
    • Pitolisant (WAKIX). This is a limited-distribution drug not priced on the web.
    • Solriamfetol (Sunosi). This is an expensive drug, found online for $696.81 ($209.04 copay).
  • Amphetamine-like stimulants such as:
  • Antidepressants for dream-interrupted sleep, cataplexy, or both. Your doctor may recommend newer medications such as:
  • Or your doctor may recommend an older antidepressant, including:
  • An FDA -approved liquid medication for narcolepsy called sodium oxybate (Xyrem). It is a controlled substance that has no price quoted online.

Tips: If you're uninsured, check out medication assistance programs offered by many drug manufacturers. And price-shop medications among pharmacies and online.

The AASM lists drug company and state agency programs that offer discounts to lower the cost of medications for sleep disorders.

Your Psychological Well-Being

Narcolepsy may be tough to manage, especially at first. Your doctor might suggest counseling sessions with a therapist. A session of cognitive behavioral therapy may cost $100 or more per hour. Make sure your insurance plan covers psychotherapy. If you're paying out-of-pocket costs, ask if the therapist offers fees on a sliding scale.

Also, check for support groups in your area that focus on coping with sleep disorders.

Adjustments to Your Lifestyle

Many lifestyle changes your doctor may suggest to control narcolepsy symptoms won’t hit you in the wallet. If anything, you should save money. Those changes may include:

One exception could be getting daily exercise, if you join a gym or health club. If you decide to do so, shop around. One national fitness chain costs just $10 per month after a $39 initiation fee.

Show Sources

SOURCES:

Mayo Clinic: “Narcolepsy: Diagnosis & Treatment,” “Narcolepsy: Symptoms & Causes.”

Cleveland Clinic: “Narcolepsy,” “Sleep Basics.”

National Institute of Neurological Disorders and Stroke: “Narcolepsy Fact Sheet.”

National Organization for Rare Disorders: “Narcolepsy.”

American Health & Drug Benefits: “The Medical and Economic Burden of Narcolepsy: Implications for Managed Care.”

Sleep Medicine: “The Burden of Narcolepsy Disease (BOND) Study: Healthcare Utilization and Cost Findings.”

American Sleep Association: “Multiple Sleep Latency Test.

Blue Cross Blue Shield of Massachusetts: “Typical Costs for Common Medical Services.”

American Academy of Sleep Medicine: “Narcolepsy,” "Find a Sleep Center," “Financial Assistance.”

Medicare.gov: “Sleep studies.”

Hypersomnia Foundation: “About Treatment.”

Johns Hopkins Bloomberg School of Public Health: “Primary Care Visits Available to Most Uninsured But at a High Price.”

Georgia Medicaid: “Medicaid Preventive Health Services.”

Anxiety & Depression Association of America: “Low-Cost Treatment.”

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