Rising to a Better Tomorrow: Addressing the Impact of Narcolepsy on Women’s Health  



By Monica Lefton, Communications Manager.

Narcolepsy is a chronic neurological sleep disorder that is often debilitating and can affect all aspects of a person’s life—from education and employment to relationships, mental health, and more.  

Narcolepsy affects an estimated 1 in every 2,000 people in the United States. Although narcolepsy is equally common and presents with similar symptoms in women and men, women face additional burdens related to pregnancy, lactation, and caregiving, and often experience a significantly longer time to diagnosis for the disorder, up to 12 years longer than men.  

On March 31, 2022, SWHR convened a diverse and interdisciplinary working group of health care providers, researchers, patients and patient advocates, and policy leaders for a one-day roundtable meeting to discuss the state of narcolepsy research and treatment. The roundtable participants highlighted knowledge gaps and unmet needs in clinical care, education, and policy that could be addressed in order to improve outcomes and livelihoods of women living with narcolepsy.  

Understanding Sleepiness, Fatigue, and Narcolepsy  

One key issue acknowledged by working group members is that many health care providers and the larger general public in the United States have a general misunderstanding regarding the importance of sleep and the signs of sleep problems. Frequently, sleepiness, fatigue, and laziness are often used interchangeably and without proper definition, warned Anne Marie Morse, DO, Director of Child Neurology and Pediatric Sleep Medicine at Geisinger Commonwealth School of Medicine, making the identification and tracking of sleep conditions in individuals difficult, if not impossible. Individuals experiencing narcolepsy in adolescence may go years without proper diagnosis because their symptoms—drowsiness and tiredness, late nights, or frequent napping—might be assumed as commonplace for teenagers and college students. “It still enrages me every time I hear a patient story and it’s the same thing over and over and over, of their symptoms being dismissed and providers normalizing sleepiness. That needs to change sleepiness is not normal,” said Dr. Morse in response to Alyssa Walker’s story. Ms. Walker, a flight attendant, person with narcolepsy, and patient advocate, spent over five years in high school and college living with narcolepsy without a proper diagnosis or treatment plan.

In other cases, a narcolepsy diagnosis may be confounded by symptoms that may also be indicative of other conditions, such as depression. Thus, identifying narcolepsy is not always easy. While the disease of narcolepsy is categorized into two types – NT1 associated with cataplexy (sudden loss of muscle tone during wakefulness) and NT2 without muscle weakness – additional symptoms, risk factors, screening, diagnosis, and treatment guidelines are inconsistently defined and considered. The gap in identifying narcolepsy is strongly rooted in a lack of consistent education on sleep in general. Dr. Morse notes that there is a huge inconsistency in regard to medical education in narcolepsy, not to mention a lack of research. “There are about 147 minutes in medical school spent on sleep medicine and 17 minutes spent on pediatric sleep medicine. Twenty-five percent of medical residencies do not include a formal sleep rotation, and for the other 75% that do, it’s typically elective,” she said.  

A better narcolepsy identification process may include implementing a scale for measuring narcolepsy likelihood, developing an objective definition of cataplexy, or creating a more reliable method for diagnosis, even beyond simplifying the performance of the standard multiple sleep latency test (MSLT). Developing a home MSLT similar to current usage of home sleep studies could be beneficial, added David Shaha, MD, Sleep Lab Director at University of Iowa Hospitals and Clinics.  

It is currently common for individuals to self-diagnose with narcolepsy through personal research, as Ms. Walker did. Improving narcolepsy-related definitions and general sleep education across the medical workforce could help address this patient burden, particularly in women, who face an average of 28 years of diagnostic delay for narcolepsy after symptom onset, compared to only 16 years in men. 

Researching Narcolepsy  

Some gaps in diagnosing and treating narcolepsy are simply based on what we still don’t know about the disease:  

“The pathophysiology of this disease is not well understood. How it happens and why it happens we don’t really understand,” said Dr. Shaha. “When we don’t understand the pathophysiology of a disease, it’s hard to develop good mechanisms to target and prevent the disease. This underlines a main problem with narcolepsy right now — we’re treating symptoms; we’re not treating the underlying disease or working to prevent the disease, because we don’t fully understand how it’s happening.” 

Working group members made several recommendations for ways to expand narcolepsy research: improve knowledge of NT2 by assessing the disease course and response to treatment independent of NT1; increase the sensitivity of current biomarker tests to better identify at-risk patient populations; advance orexin testing to become less invasive; explore systems approaches and serum tests to develop diagnostic biomarkers and immunology tests; employ machine learning and digital tools to improve identification and  management of narcolepsy; and develop virtual MSLT options. 

Qualitative data is also valuable for narcolepsy research, Jason Ong, PhD, Director of Behavioral Sleep Medicine at Nox Health shared. Physicians and researchers should be prepared to regularly collect qualitative reviews provided by people living with narcolepsy in order to be able to articulate treatment effectiveness, particularly between males and females. Relevant qualitative data may include the role of diet and nutrition; the role of napping; sexual intimacy patterns; mental health strains, including related mental health medications; the role as a caregiver; and general impacts of narcolepsy on a person’s quality of life.  

Women with narcolepsy require additional research investment in order to understand the association between narcolepsy and conditions that exclusively affect women. Research areas may include identifying female-specific biomarkers for narcolepsy or related medical conditions; examining how menstrual cycles affect symptoms; studying the impact of narcolepsy and the medications used to treat narcolepsy on contraception and family planning, pregnancy, childbirth, and the post-partum period, for both mother and baby; and research associated with caregiving responsibilities, both as a person with narcolepsy and/or when caring for a person with narcolepsy. Without accounting for these sex and gender differences, narcolepsy research will continue to fall short for at least half of the population.  

Treating the Disease and the Person  

All narcolepsy treatments must cater to the person living with the disease and not just their symptoms, working group members agreed. As Astrid Homan, MBA, a freelance translator, person with narcolepsy, and patient advocate, suggested, this involves finding the right health care provider. She shared from personal experience that once you receive a narcolepsy diagnosis and are faced with a lifetime of chronic disease management, trusting your doctor makes all the difference. This sentiment was echoed in Ms. Walker’s story. Despite persistent conversations with her provider about the debilitating headaches her medication caused, it took the understanding of a nurse practitioner to change Ms. Walker’s medication so she could finish her college career while continuing treatment for narcolepsy.  

Narcolepsy also presents mental health challenges that affect quality of life. Individuals may purposefully avoid situations that might excite them or make them happy for fear of cataplexy, so they find themselves in a self-imposed pseudo-depression, explained Rochelle Zak, MD, Associate Professor of Medicine at University of California, San Francisco Health. Many anxiety disorders are more likely to be diagnosed in people with narcolepsy. Living with this depression can be especially difficult for women, who often need to care for their own needs in addition to serving as the primary caregiver for their families. Improved physician communication and greater public awareness, education, and support can help ease the physical and psychosocial burdens of narcolepsy. Improving narcolepsy education across the care ecosystem and reshaping sleep culture in the United States are particularly important to improving quality of life for people with narcolepsy. This may begin in medical school but should extend to primary schools and community information centers, with sleep materials accessible to parents, teachers, and families.  

Many organizations already offer resources for identifying and treating narcolepsy, but dissemination of such materials can be improved, shared Monica Gow, MPA, Founder and Executive Director of Wake Up Narcolepsy. For example, the newly released Pediatric Hypersomnolence Survey screening tool, designed by Boston’s Children’s Hospital through the support of Coverys Health Care and Wake Up Narcolepsy, can be used in clinical offices as well as community settings to assess sleepy kids and teens for possible narcolepsy. Wake Up Narcolepsy also offers a variety of other resources, including support groups, conferences, podcasts, and free online narcolepsy care and clinical trial information. 

A Dream for Narcolepsy Policy  

The working group deemed health care costs a top policy consideration. Narcolepsy is a lifelong disease, so people with narcolepsy face greater pharmaceutical needs and more physician visits. Reducing out-of-pocket patient costs for visits, medications, and testing can help address disparities in narcolepsy outcomes for women, rural, and monitored populations. Similarly, improving access to narcolepsy care, whether through telehealth services, improved physician education, or treatments that not only manage symptoms but also consider people’s quality of life, is key for addressing disease disparities.   

Workplace and education accommodations were also mentioned as a policy priority. While narcolepsy is covered by the Americans with Disabilities Act (ADA), people with narcolepsy may not file for support given disease stigma. To address this, employers should offer flexible schedules, private nap areas (similar to a mothers/lactation room), and accommodate potential absenteeism for employees with narcolepsy. In schools, teachers should be equipped with screening tools, classroom accommodations, and ADA resources for students with narcolepsy, encouraging them to become their own advocates. Sleep disorder testing should also be included in school-based screening protocol, Gow and Dr. Morse added, to combat the frequent misdiagnosis or diagnostic delay in people with narcolepsy, especially for girls and women.  

Finally, all policy work aimed at improving women’s experience with narcolepsy should rely heavily on the inclusion of female voices and experiences to inform clinical practice and legislation.  

“We need to shift our thinking about the burden of this disease to be more patient centric. Yes, women are experiencing symptoms that may be the same as men… but the reality is there is a continuum of life occurring differently for women that we need to measure and qualify,” Dr. Morse said.  

A New Day for Living with Narcolepsy  

While narcolepsy can be a debilitating condition, particularly for women, improving disease education will offer women more opportunities to reduce delays in diagnosis and care, make informed decisions about lifelong treatment (particularly as it relates to potential pregnancy or caregiving roles), and become their own health care advocate. It takes the community — from informed physicians and legislators to workplace advocates and supportive peers — to advance sleep research, improve treatment access, and extend narcolepsy policy that will improve outcomes for those living with the disease.  

SWHR will continue searching for opportunities to build awareness, advance science-based policies that expand access to coverage, and advocate for improved health equity and outcomes for women living with narcolepsy. SWHR will publish a toolkit and a fact sheet this fall for people with narcolepsy, providing additional resources for women living with narcolepsy. 

 

SWHR’s Narcolepsy Program is supported by an educational sponsorship from Avadel Pharmaceuticals. SWHR maintains editorial control and independence over educational content.  

By Monica Lefton, Communications Manager.

Narcolepsy is a chronic neurological sleep disorder that is often debilitating and can affect all aspects of a person’s life—from education and employment to relationships, mental health, and more.  

Narcolepsy affects an estimated 1 in every 2,000 people in the United States. Although narcolepsy is equally common and presents with similar symptoms in women and men, women face additional burdens related to pregnancy, lactation, and caregiving, and often experience a significantly longer time to diagnosis for the disorder, up to 12 years longer than men.  

On March 31, 2022, SWHR convened a diverse and interdisciplinary working group of health care providers, researchers, patients and patient advocates, and policy leaders for a one-day roundtable meeting to discuss the state of narcolepsy research and treatment. The roundtable participants highlighted knowledge gaps and unmet needs in clinical care, education, and policy that could be addressed in order to improve outcomes and livelihoods of women living with narcolepsy.  

Understanding Sleepiness, Fatigue, and Narcolepsy  

One key issue acknowledged by working group members is that many health care providers and the larger general public in the United States have a general misunderstanding regarding the importance of sleep and the signs of sleep problems. Frequently, sleepiness, fatigue, and laziness are often used interchangeably and without proper definition, warned Anne Marie Morse, DO, Director of Child Neurology and Pediatric Sleep Medicine at Geisinger Commonwealth School of Medicine, making the identification and tracking of sleep conditions in individuals difficult, if not impossible. Individuals experiencing narcolepsy in adolescence may go years without proper diagnosis because their symptoms—drowsiness and tiredness, late nights, or frequent napping—might be assumed as commonplace for teenagers and college students. “It still enrages me every time I hear a patient story and it’s the same thing over and over and over, of their symptoms being dismissed and providers normalizing sleepiness. That needs to change sleepiness is not normal,” said Dr. Morse in response to Alyssa Walker’s story. Ms. Walker, a flight attendant, person with narcolepsy, and patient advocate, spent over five years in high school and college living with narcolepsy without a proper diagnosis or treatment plan.

In other cases, a narcolepsy diagnosis may be confounded by symptoms that may also be indicative of other conditions, such as depression. Thus, identifying narcolepsy is not always easy. While the disease of narcolepsy is categorized into two types – NT1 associated with cataplexy (sudden loss of muscle tone during wakefulness) and NT2 without muscle weakness – additional symptoms, risk factors, screening, diagnosis, and treatment guidelines are inconsistently defined and considered. The gap in identifying narcolepsy is strongly rooted in a lack of consistent education on sleep in general. Dr. Morse notes that there is a huge inconsistency in regard to medical education in narcolepsy, not to mention a lack of research. “There are about 147 minutes in medical school spent on sleep medicine and 17 minutes spent on pediatric sleep medicine. Twenty-five percent of medical residencies do not include a formal sleep rotation, and for the other 75% that do, it’s typically elective,” she said.  

A better narcolepsy identification process may include implementing a scale for measuring narcolepsy likelihood, developing an objective definition of cataplexy, or creating a more reliable method for diagnosis, even beyond simplifying the performance of the standard multiple sleep latency test (MSLT). Developing a home MSLT similar to current usage of home sleep studies could be beneficial, added David Shaha, MD, Sleep Lab Director at University of Iowa Hospitals and Clinics.  

It is currently common for individuals to self-diagnose with narcolepsy through personal research, as Ms. Walker did. Improving narcolepsy-related definitions and general sleep education across the medical workforce could help address this patient burden, particularly in women, who face an average of 28 years of diagnostic delay for narcolepsy after symptom onset, compared to only 16 years in men. 

Researching Narcolepsy  

Some gaps in diagnosing and treating narcolepsy are simply based on what we still don’t know about the disease:  

“The pathophysiology of this disease is not well understood. How it happens and why it happens we don’t really understand,” said Dr. Shaha. “When we don’t understand the pathophysiology of a disease, it’s hard to develop good mechanisms to target and prevent the disease. This underlines a main problem with narcolepsy right now — we’re treating symptoms; we’re not treating the underlying disease or working to prevent the disease, because we don’t fully understand how it’s happening.” 

Working group members made several recommendations for ways to expand narcolepsy research: improve knowledge of NT2 by assessing the disease course and response to treatment independent of NT1; increase the sensitivity of current biomarker tests to better identify at-risk patient populations; advance orexin testing to become less invasive; explore systems approaches and serum tests to develop diagnostic biomarkers and immunology tests; employ machine learning and digital tools to improve identification and  management of narcolepsy; and develop virtual MSLT options. 

Qualitative data is also valuable for narcolepsy research, Jason Ong, PhD, Director of Behavioral Sleep Medicine at Nox Health shared. Physicians and researchers should be prepared to regularly collect qualitative reviews provided by people living with narcolepsy in order to be able to articulate treatment effectiveness, particularly between males and females. Relevant qualitative data may include the role of diet and nutrition; the role of napping; sexual intimacy patterns; mental health strains, including related mental health medications; the role as a caregiver; and general impacts of narcolepsy on a person’s quality of life.  

Women with narcolepsy require additional research investment in order to understand the association between narcolepsy and conditions that exclusively affect women. Research areas may include identifying female-specific biomarkers for narcolepsy or related medical conditions; examining how menstrual cycles affect symptoms; studying the impact of narcolepsy and the medications used to treat narcolepsy on contraception and family planning, pregnancy, childbirth, and the post-partum period, for both mother and baby; and research associated with caregiving responsibilities, both as a person with narcolepsy and/or when caring for a person with narcolepsy. Without accounting for these sex and gender differences, narcolepsy research will continue to fall short for at least half of the population.  

Treating the Disease and the Person  

All narcolepsy treatments must cater to the person living with the disease and not just their symptoms, working group members agreed. As Astrid Homan, MBA, a freelance translator, person with narcolepsy, and patient advocate, suggested, this involves finding the right health care provider. She shared from personal experience that once you receive a narcolepsy diagnosis and are faced with a lifetime of chronic disease management, trusting your doctor makes all the difference. This sentiment was echoed in Ms. Walker’s story. Despite persistent conversations with her provider about the debilitating headaches her medication caused, it took the understanding of a nurse practitioner to change Ms. Walker’s medication so she could finish her college career while continuing treatment for narcolepsy.  

Narcolepsy also presents mental health challenges that affect quality of life. Individuals may purposefully avoid situations that might excite them or make them happy for fear of cataplexy, so they find themselves in a self-imposed pseudo-depression, explained Rochelle Zak, MD, Associate Professor of Medicine at University of California, San Francisco Health. Many anxiety disorders are more likely to be diagnosed in people with narcolepsy. Living with this depression can be especially difficult for women, who often need to care for their own needs in addition to serving as the primary caregiver for their families. Improved physician communication and greater public awareness, education, and support can help ease the physical and psychosocial burdens of narcolepsy. Improving narcolepsy education across the care ecosystem and reshaping sleep culture in the United States are particularly important to improving quality of life for people with narcolepsy. This may begin in medical school but should extend to primary schools and community information centers, with sleep materials accessible to parents, teachers, and families.  

Many organizations already offer resources for identifying and treating narcolepsy, but dissemination of such materials can be improved, shared Monica Gow, MPA, Founder and Executive Director of Wake Up Narcolepsy. For example, the newly released Pediatric Hypersomnolence Survey screening tool, designed by Boston’s Children’s Hospital through the support of Coverys Health Care and Wake Up Narcolepsy, can be used in clinical offices as well as community settings to assess sleepy kids and teens for possible narcolepsy. Wake Up Narcolepsy also offers a variety of other resources, including support groups, conferences, podcasts, and free online narcolepsy care and clinical trial information. 

A Dream for Narcolepsy Policy  

The working group deemed health care costs a top policy consideration. Narcolepsy is a lifelong disease, so people with narcolepsy face greater pharmaceutical needs and more physician visits. Reducing out-of-pocket patient costs for visits, medications, and testing can help address disparities in narcolepsy outcomes for women, rural, and monitored populations. Similarly, improving access to narcolepsy care, whether through telehealth services, improved physician education, or treatments that not only manage symptoms but also consider people’s quality of life, is key for addressing disease disparities.   

Workplace and education accommodations were also mentioned as a policy priority. While narcolepsy is covered by the Americans with Disabilities Act (ADA), people with narcolepsy may not file for support given disease stigma. To address this, employers should offer flexible schedules, private nap areas (similar to a mothers/lactation room), and accommodate potential absenteeism for employees with narcolepsy. In schools, teachers should be equipped with screening tools, classroom accommodations, and ADA resources for students with narcolepsy, encouraging them to become their own advocates. Sleep disorder testing should also be included in school-based screening protocol, Gow and Dr. Morse added, to combat the frequent misdiagnosis or diagnostic delay in people with narcolepsy, especially for girls and women.  

Finally, all policy work aimed at improving women’s experience with narcolepsy should rely heavily on the inclusion of female voices and experiences to inform clinical practice and legislation.  

“We need to shift our thinking about the burden of this disease to be more patient centric. Yes, women are experiencing symptoms that may be the same as men… but the reality is there is a continuum of life occurring differently for women that we need to measure and qualify,” Dr. Morse said.  

A New Day for Living with Narcolepsy  

While narcolepsy can be a debilitating condition, particularly for women, improving disease education will offer women more opportunities to reduce delays in diagnosis and care, make informed decisions about lifelong treatment (particularly as it relates to potential pregnancy or caregiving roles), and become their own health care advocate. It takes the community — from informed physicians and legislators to workplace advocates and supportive peers — to advance sleep research, improve treatment access, and extend narcolepsy policy that will improve outcomes for those living with the disease.  

SWHR will continue searching for opportunities to build awareness, advance science-based policies that expand access to coverage, and advocate for improved health equity and outcomes for women living with narcolepsy. SWHR will publish a toolkit and a fact sheet this fall for people with narcolepsy, providing additional resources for women living with narcolepsy. 

 

SWHR’s Narcolepsy Program is supported by an educational sponsorship from Avadel Pharmaceuticals. SWHR maintains editorial control and independence over educational content.  

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