Sleep Care

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The Economic Impact of Narcolepsy

Narcolepsy is a disorder that causes extreme daytime sleepiness. Some individuals who suffer from narcolepsy also have muscle weakness and most have difficulty sleeping at night. Narcolepsy can cause someone to fall asleep very suddenly, even while talking,

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eating, or taking part in other activities. Other effects of narcolepsy are sleep paralysis, the inability to move or speak when waking from sleep, cataplexy, the sudden loss of muscle tone while awake, and even hallucinations, vivid dreams while sleeping or waking up. Most who suffer from narcolepsy have lower than normal levels of hypocretin in the brain. Hypocretin is a chemical that helps promote wakefulness, thus explaining why extreme sleepiness would occur. Why the levels may be lower in one person to another still isn’t totally understood. While narcolepsy can cause stress on social activities, schooling, and day to day functions recent studies have also shown that narcolepsy may also be a big economic burden on an individual and even be widely miss or under diagnosed.

Doctor ExplainingIn the most recent SLEEP 2013 conference in Baltimore a study sponsored by Jazz Pharmaceuticals found that patients with narcolepsy were much more likely to suffer from comorbidities. These results were not dependent on if the patient had or didn’t have cataplexy. This study was titled the Burden of Narcolepsy Disease (BOND) and examined not only the comorbidities linked to narcolepsy but also the burden the disease causes on individuals. A group of 9,000 people who had narcolepsy and at least five years of health care data collected consecutively was compared to a group of 46,000 patients who made up the control group. What BOND found was that people who had narcolepsy had higher frequencies of circulatory conditions, higher frequency of anxiety and mood disorders, and higher rates of sleep apnea just to name a few. Economically speaking, this meant for the patients higher rates of psychiatric medication, higher rates of health care use, and overall higher rate of hospital admissions and physician visits.

Two other surveys that were presented at SLEEP highlighted how underdiagnosed and misunderstood narcolepsy still is today. A survey labeled AWAKEN (The Awareness and Knowledge in Narcolepsy) helped to highlight the many challenges a patient must go through before reaching a correct narcolepsy diagnosis. The AWAKEN survey was conducted online with a total of 1,000 adults, 100 sleep specialists, and 300 primary care physicians. The survey revealed only 42% of sleep specialists and 9% of primary care physicians feel comfortable diagnosing narcolepsy. What may be even more alarming is that fact that 22% of sleep specialists reported they are “not very or not at all comfortable” diagnosing narcolepsy. Through multiple physician visits and often multiple misdiagnoses again economically this hinders the patients who suffer from narcolepsy. Seventy-five expert board certified sleep specialists were also surveyed by Jazz Pharmaceuticals and the survey revealed 60% of patients had been misdiagnosed before receiving the narcolepsy diagnosis and 67% of patients visited multiple providers before receiving the proper diagnosis.

The primary author of AWAKEN, Russell Rosenberg, Ph D, was quoted to say “Approximately half of the patients living with narcolepsy go undiagnosed or are misdiagnosed, and many live with the disorder for 10 years before they receive a correct diagnosis.” By analyzing these findings from the surveys it sheds light on the current misunderstandings of narcolepsy and highlights the importance of knowledge physicians must have on the disorder of narcolepsy. With healthcare costs raising there is now an economic effect on patients as well as a mental and physical one. Hopefully with this new information, people who are experiencing narcolepsy may have a more direct path to the diagnosis and treatment of the disorder.

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