New Survey Identifies Need For Increased Education About And New Treatment Options For Narcolepsy
Often Misunderstood and Misdiagnosed, Narcolepsy Impacts a Person’s Daily Functioning and Social Well-Being
PLYMOUTH MEETING, PA, October 9, 2018 – Results of a three-part survey of those living with narcolepsy (n=200), treating physicians (n=251) and the general public (n=1,203) bring to light the serious impact of this rare, chronic neurologic disorder on daily life. The Know Narcolepsy™ survey, conducted by Versta Research among a total of 1,654 respondents on behalf of Harmony Biosciences, LLC, in collaboration with patient advocacy organization, Narcolepsy Network, highlighted that narcolepsy is life-changing for the majority (86 percent, n=172) of those surveyed living with the disorder. However, 78 percent (n=938) of the general public surveyed agreed they have no idea what it must be like to live with narcolepsy, which impacts up to 200,000 Americans.
Among people living with narcolepsy surveyed (n=200):
Over two-thirds (68 percent, n=136) agreed they never feel like a normal person because of the disorder and 80 percent (n=160) said living with narcolepsy is a daily struggle.
More than half (54 percent, n=108) agreed narcolepsy controls their lives.
Seventy-six percent (n=152) agreed the disorder has affected important moments in their lives.
More than a third (37 percent, n=74) reported having failed a class at school or having withdrawn entirely because of symptoms of narcolepsy.
One in four (25 percent, n=50) reported they have been fired from a job or demoted because of problems related to narcolepsy, and among those currently employed, a majority (60 percent, n=55) agreed they were worried about losing their jobs because of the disorder.
“Narcolepsy is a serious, neurological disorder that impacts many aspects of life, including family, school, careers and relationships, if not appropriately managed,” said Dr. Michael Thorpy, M.D., director of the Sleep-Wake Disorders Center at the Montefiore Medical Center in New York. “I’m hopeful that the survey results will encourage much-needed dialogue in the exam room, within the community and among the general public to help increase awareness and understanding, and to further advance patient care.”
The survey also underscored the complexity of the disorder and challenges in symptom recognition and diagnosis. According to people living with narcolepsy surveyed:
They may spend years living with symptoms, and the journey to diagnosis can be long and complex. In fact, on average, it took six plus years to be diagnosed following the onset of their symptoms.
Four out of 10 (38 percent, n=76) were initially misdiagnosed with another condition, most commonly (25 percent, n=50) with depression.
According to literature, about two-thirds of people living with narcolepsy have cataplexy, a sudden and brief loss of muscle strength or tone brought on by emotions or situations. Yet, only a quarter of those living with narcolepsy surveyed (26 percent, n=52) reported having cataplexy to their physician, and over half (54 percent, n=108) reported knowing little to nothing about cataplexy.
Nearly all (94 percent, n=188) agreed there is more to be done to improve communication and further education.
“The mischaracterization of narcolepsy in our culture fuels the stigma associated with the disorder, which is detrimental to the narcolepsy community and further isolates people living with narcolepsy,” said Eveline Honig, M.D., M.P.H., executive director of Narcolepsy Network, a national patient support organization dedicated to education and support for the community. “These survey results shed light on the issue and help advance awareness, compassion and understanding toward those living with narcolepsy.”
Even with treatment, people living with narcolepsy continue to feel the impact of their symptoms. The survey underscored the need for new treatment options to address the challenges and unmet needs of people living with narcolepsy. Nearly all (94 percent, n=188) of people living with narcolepsy surveyed believed there is a need for more treatment options.
When asked about their biggest frustrations with medications for narcolepsy symptoms, 56 percent (n=112) said side effects, 46 percent (n=92) said loss of efficacy over time, 20 percent (n=40) said inconvenient to take, and 17 percent (n=34) said worries about abuse.
Only one in eight (12 percent, n=24) agreed their narcolepsy symptoms are completely or mostly under control.
Consistent with responses from people living with narcolepsy, nearly all of physicians surveyed (94 percent, n=235) agreed there is a need for new and better treatment options, and more than nine out of ten (95 percent, n=238) reported that medications offering new mechanisms of action (MOAs) would be valuable to them.
Visit KnowNarcolepsy.com for more information on the survey, personal stories and resources for people living with narcolepsy, their loved ones and the healthcare professionals who treat the disorder.
About The Survey
The three-part Know Narcolepsy™ survey was conducted by Versta Research on behalf of Harmony Biosciences, LLC, and in collaboration with Narcolepsy Network. The research was conducted online in March, April and August, 2018. The respondents were recruited from large national research panels used exclusively for research, and included 200 U.S. adults with narcolepsy, 1,203 U.S. adults without narcolepsy, and 251 physicians currently in clinical practice who have treated patients with narcolepsy in the last two years.
Narcolepsy is a rare, chronic, debilitating neurologic disorder of sleep-wake state instability that impacts up to 200,000 Americans and is primarily characterized by excessive daytime sleepiness, cataplexy, and other manifestations of REM sleep dysregulation, which intrude into wakefulness. In most patients, it is caused by the loss of hypocretin, a neuropeptide in the brain that helps to promote and maintain sleep-wake state stability. This disorder affects men and women equally with typical symptom onset in adolescence or young adulthood; however, it can take up to a decade to be properly diagnosed. Narcolepsy can cause significant burden on patients and their families, affecting their ability to perform routine tasks, limit achievement at school and work, impact social relationships and cause impairment in overall quality of life.
Cataplexy is one of several symptoms of narcolepsy that represent elements of REM sleep state intruding into wakefulness, characterized by sudden temporary loss of muscle tone. Cataplexy can be subtle, such as drooping of eyelids, or severe, such as knee buckling or total body collapse. Often times, symptoms of cataplexy may go unrecognized because of the subtle nature of the symptoms in some patients, variability of how cataplexy is expressed, and/or lack of patient complaints or physician recognition of the symptoms as manifestations of cataplexy. This symptom of narcolepsy can often cause significant impact on a person’s ability to carry out normal daily functions. Up to two-thirds of all narcolepsy patients have cataplexy (known as Type 1 narcolepsy); cataplexy is one of the most debilitating symptoms of this chronic, rare neurologic disorder.
Narcolepsy Network is a non-profit patient support organization that advocates for all persons with narcolepsy and assists member volunteers to spread awareness in their local communities. The organization promotes public awareness of narcolepsy and educates, informs and provides emotional support to individuals with narcolepsy, their family members, friends and medical providers. To learn more about narcolepsy, visit their web site at www.narcolepsynetwork.org. Groups wishing to obtain information or arrange for a speaker can email them at firstname.lastname@example.org or call their office at 1-888-292-6522.
Harmony Biosciences, LLC
Harmony Biosciences, LLC, is a private biopharmaceutical company headquartered in Plymouth Meeting, PA. The company was established in October 2017 by global biopharmaceutical incubator and investment firm, Paragon Biosciences, LLC, with a vision to provide novel treatment options for people living with rare and orphan diseases with an emphasis on central nervous system disorders, starting with patients living with narcolepsy. Harmony Biosciences is committed to advancing the understanding of narcolepsy and providing information and resources to individuals who live with narcolepsy and healthcare professionals who treat patients with this disorder. On February 28, 2018, National Rare Disease Awareness Day, Harmony Biosciences launched Know Narcolepsy™, an educational campaign to help increase understanding of the disease and provide a new resource for the community. KnowNarcolepsy.com includes information about narcolepsy and cataplexy as well as powerful patient stories about living with the disease. Harmony Biosciences received the 2017 Deal of the Year Award from Life Sciences PA. For more information on Harmony Biosciences, visit www.harmonybiosciences.com.