Ad­vanc­ing Sleep Med­i­cine: Pi­o­neer­ing Re­search and Car­dio­vas­cu­lar Health in Nar­colep­sy

For near­ly two decades, Jazz Phar­ma­ceu­ti­cals has been at the fore­front of de­liv­er­ing in­no­v­a­tive med­i­cines to those liv­ing with de­bil­i­tat­ing sleep dis­or­ders. Our jour­ney has been shaped by our foun­da­tion­al ex­per­tise in nar­colep­sy and ded­i­ca­tion to mak­ing pi­o­neer­ing achieve­ments for this dis­or­der.

Each year on Sep­tem­ber 22, the sleep com­mu­ni­ty comes to­geth­er to rec­og­nize World Nar­colep­sy Day. This day holds par­tic­u­lar im­por­tance, serv­ing as an op­por­tu­ni­ty to raise aware­ness and re­duce the stig­ma around nar­colep­sy. Year af­ter year, we reaf­firm our ded­i­ca­tion to this com­mu­ni­ty by per­sist­ing in our ef­forts to in­crease aware­ness among health­care providers, those who sup­port in­di­vid­u­als with nar­colep­sy, as well as the greater pub­lic that may have lit­tle un­der­stand­ing of the dev­as­tat­ing im­pact of this con­di­tion.

In­creas­ing Un­der­stand­ing of Nar­colep­sy

Nar­colep­sy is a chron­ic, de­bil­i­tat­ing neu­ro­log­ic sleep dis­or­der that af­fects ap­prox­i­mate­ly 20 to 55 per 100,000 peo­ple world­wide.1,2 While it is of­ten over­looked and mis­un­der­stood, it is a se­ri­ous con­di­tion and peo­ple can live with symp­toms for years be­fore re­ceiv­ing a prop­er di­ag­no­sis.3 It is es­ti­mat­ed that half of the peo­ple liv­ing with nar­colep­sy may not know they have the con­di­tion.4

Nar­colep­sy is pri­mar­i­ly char­ac­ter­ized by ex­ces­sive day­time sleepi­ness and the in­abil­i­ty to reg­u­late sleep-wake cy­cles nor­mal­ly.1 Peo­ple with nar­colep­sy fre­quent­ly en­counter episodes of sud­den sleepi­ness known as “sleep at­tacks” and, de­spite their ef­forts to re­sist the urge to sleep, they un­in­ten­tion­al­ly fall asleep for a brief pe­ri­od of time that can oc­cur at in­ap­pro­pri­ate or even haz­ardous mo­ments, in­clud­ing while dri­ving, eat­ing, or even in the midst of a con­ver­sa­tion.5,6,7

Due to its de­bil­i­tat­ing na­ture, nar­colep­sy can have a sig­nif­i­cant, neg­a­tive im­pact on an in­di­vid­ual’s psy­cho­log­i­cal, so­cial, and pro­fes­sion­al func­tion­ing—it is a chron­ic con­di­tion with no cure and re­quires life­long treat­ment.8 In ad­di­tion to these se­vere symp­toms and dis­rup­tions to dai­ly life, peo­ple with nar­colep­sy have an in­creased risk of de­vel­op­ing oth­er health com­pli­ca­tions.

The In­ter­sec­tion of Nar­colep­sy and Car­dio­vas­cu­lar Health

In our re­lent­less pur­suit of in­no­va­tion and quest to deep­en our knowl­edge of nar­colep­sy, we be­gan to ex­plore the role of co­mor­bidi­ties in this con­di­tion, un­cov­er­ing some alarm­ing truths. Peo­ple liv­ing with nar­colep­sy face an in­creased risk of de­vel­op­ing car­dio­vas­cu­lar and car­diometa­bol­ic co­mor­bidi­ties in­clud­ing high blood pres­sure, heart dis­eases, el­e­vat­ed cho­les­terol lev­els, di­a­betes and obe­si­ty.9,10 Our study, known as the CV-BOND study, fur­ther con­firmed these find­ings, re­veal­ing that in­di­vid­u­als with nar­colep­sy are at high­er risk of ex­pe­ri­enc­ing new-on­set car­dio­vas­cu­lar events when com­pared to those with­out nar­colep­sy. Specif­i­cal­ly, un­ad­just­ed in­ci­dence rates for new-on­set car­dio­vas­cu­lar events were high­er in pa­tients with nar­colep­sy than those with­out, in­clud­ing any stroke (4.3 ver­sus 2.2 un­ad­just­ed in­ci­dence per 1,000 per­son-years), car­dio­vas­cu­lar dis­ease (13.3 ver­sus 8.0) and heart fail­ure (5.7 ver­sus 3.4).11

These clin­i­cal find­ings un­der­score the im­por­tance of mon­i­tor­ing car­dio­vas­cu­lar risk fac­tors, such as sodi­um in­take, in those with nar­colep­sy and think­ing holis­ti­cal­ly about their health. En­gag­ing in healthy lifestyle choic­es and main­tain­ing a bal­anced di­et can in­flu­ence sodi­um in­take as food and bev­er­ages are com­mon sources of sodi­um con­sump­tion. Ul­ti­mate­ly, health­care providers need to look be­yond symp­tom con­trol and con­sid­er broad­er life­long health im­pli­ca­tions when man­ag­ing pa­tients with nar­colep­sy.

It’s crit­i­cal that pa­tients and care­givers too rec­og­nize this con­nec­tion. That is why we are proud to pro­vide sup­port to the Amer­i­can Heart As­so­ci­a­tion to de­vel­op ed­u­ca­tion for both pa­tients and health­care providers on the im­pact of sleep dis­or­ders on heart health. Most no­tably, the Amer­i­can Heart As­so­ci­a­tion added sleep to its check­list for mea­sur­ing car­dio­vas­cu­lar health, evolv­ing Life’s Sim­ple 7™ car­dio­vas­cu­lar health score in­to Life’s Es­sen­tial 8™. Ad­di­tion­al­ly, the chief clin­i­cal sci­ence of­fi­cer of the As­so­ci­a­tion re­cent­ly stat­ed, “Re­search con­tin­ues to demon­strate that peo­ple with sleep dis­or­ders like nar­colep­sy may face even greater risk for heart dis­ease and stroke than the gen­er­al pop­u­la­tion.”

A Team Unit­ed by Pur­pose

Since 2005, we have strived to forge new paths in sleep med­i­cine that have an im­pact on pa­tients’ lives. As we com­mem­o­rate World Nar­colep­sy Day, our com­mit­ment to ad­vance care for a con­di­tion that touch­es the lives of count­less in­di­vid­u­als on­ly grows.

Be­ing part of Jazz ex­pands be­yond just a ca­reer. Our col­lec­tive pas­sion pro­pels us to delve in­to the com­plex­i­ties of sleep dis­or­ders in or­der to po­ten­tial­ly shift the nar­ra­tive for pa­tients liv­ing with this dis­ease. This path isn’t just about sci­en­tif­ic progress, it’s about em­pow­er­ing in­di­vid­u­als to em­brace a health­i­er fu­ture—one where sleep and car­dio­vas­cu­lar health are rec­og­nized as an es­sen­tial cor­ner­stone of over­all well-be­ing.

I’m proud to have joined Jazz on its 20-year jour­ney of dis­cov­ery and trans­for­ma­tion in this field. As we look ahead to the next decade, we will con­tin­ue to push the bound­aries of con­ven­tion­al think­ing and sup­port the ad­vance­ment of re­search and so­lu­tions for dev­as­tat­ing sleep dis­or­ders.

For more in­for­ma­tion on nar­colep­sy, pa­tients can vis­it MoreThanTired.com and health­care providers can vis­it Nar­colep­syLink.com.


Sources

1Na­tion­al In­sti­tute of Neu­ro­log­i­cal Dis­or­ders and Stroke. Nar­colep­sy. https://www.ninds.nih.gov/health-in­for­ma­tion/dis­or­ders/nar­colep­sy. Ac­cessed Sep­tem­ber 2023.
2Scheer D, Schwartz S, Parr M, et al. In­ci­dence and preva­lence of nar­colep­sy in a U.S. health­care claims data­base, 2008–2010. Sleep. 2018;41(sup­pl_1):A227.
3Mor­rish E, King M, et al. Fac­tors as­so­ci­at­ed with a de­lay in the di­ag­no­sis of nar­colep­sy. Sleep Med. 2004;5(1):37-41.
4Ahmed I, Thor­py, M. Clin­i­cal Fea­tures, Di­ag­no­sis and Treat­ment of Nar­colep­sy. Clin Chest Med. 2010;31(2):371-381.
5Dauvil­liers Y, Ar­nulf I, Mignot E. Nar­colep­sy with cat­a­plexy. Lancet. 2007;369(9560):499-511.
6Colten HR, Al­tevogt BM, In­sti­tute of Med­i­cine (US) Com­mit­tee on Sleep Med­i­cine and Re­search, eds. Sleep Dis­or­ders and Sleep De­pri­va­tion: An Un­met Pub­lic Health Prob­lem. Wash­ing­ton (DC): Na­tion­al Acad­e­mies Press (US); 2006.
7Pea­cock J, Ben­ca RM. Nar­colep­sy: clin­i­cal fea­tures, co-mor­bidi­ties & treat­ment. In­di­an J Med Res. 2010;131:338-349.
8Na­tion­al Health Ser­vice. Nar­colep­sy – Overview. 2019. https://www.nhs.uk/con­di­tions/nar­colep­sy/. Ac­cessed Sep­tem­ber 2023.
9Black J, Reav­en NL, Funk SE, et al. Med­ical co­mor­bid­i­ty in nar­colep­sy: find­ings from the Bur­den of Nar­colep­sy Dis­ease (BOND) study. Sleep Med. 2017;33:13-18.
10Ohay­on MM. Nar­colep­sy is com­pli­cat­ed by high med­ical and psy­chi­atric co­mor­bidi­ties: a com­par­i­son with the gen­er­al pop­u­la­tion. Sleep Med. 2013;14(6):488-492.
11Ben-Joseph RH, Saad R, Black J, et al. Car­dio­vas­cu­lar Bur­den of Nar­colep­sy Dis­ease (CV-BOND): A Re­al-World Ev­i­dence Study. Sleep. 2023;zsad161.

Author

P.J. Honerkamp

Senior Vice President and Sleep Business Unit Head at Jazz Pharmaceuticals