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SLEEP 2026 | Managing narcolepsy during pregnancy: addressing critical evidence gaps
Kelsey Biddle, MD, Brigham and Women’s Hospital, Boston, MA, discusses the unique challenges faced by women with narcolepsy during family planning, pregnancy, and the perinatal period. She highlights the lack of evidence to guide medication use and symptom management, emphasizing the need for pregnancy registries and prospective research to better inform treatment decisions and improve care for patients with narcolepsy. This interview took place at the 40th annual meeting of the Associated Professional Sleep Societies (APSS) in Baltimore, MD.
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Transcript
So, you know, this is a topic that I’ve really become passionate about over the last few years. It started with a good friend of mine who was starting to think about starting a family of her own. And when she went to her sleep doctor, his advice was since there are no medications that have been proven safe for pregnancy, he recommended that she stop all of her medications. And this was really surprising to me and made me quite anxious about my own future as somebody living with narcolepsy, and I think the position that women with narcolepsy are left in, in the absence of really robust research and data on medication safety, symptoms and symptom trajectory during pregnancy, they really feel like they’re left on their own to make these really difficult decisions about taking medications, what that might look like, and end up sort of relying on anecdotal advice from peers rather than what we, I think, would all prefer is data...
So, you know, this is a topic that I’ve really become passionate about over the last few years. It started with a good friend of mine who was starting to think about starting a family of her own. And when she went to her sleep doctor, his advice was since there are no medications that have been proven safe for pregnancy, he recommended that she stop all of her medications. And this was really surprising to me and made me quite anxious about my own future as somebody living with narcolepsy, and I think the position that women with narcolepsy are left in, in the absence of really robust research and data on medication safety, symptoms and symptom trajectory during pregnancy, they really feel like they’re left on their own to make these really difficult decisions about taking medications, what that might look like, and end up sort of relying on anecdotal advice from peers rather than what we, I think, would all prefer is data. I think, you know, there are two main research gaps. One, you know, as I mentioned, is the sort of lack of data on medication safety during pregnancy as well as lactation. And I think really sort of advocating for the companies that are developing and have developed drugs for narcolepsy and other hypersomnias to sort of work together to try to, you know, participate in registries either voluntarily or because, you know, it’s required via the FDA to start to answer some of these questions and close the gap on, like, is this medication safe or not for use during pregnancy and lactation. I think the other, you know, people – some people will report their symptoms of narcolepsy improved during pregnancy. Others feel like they don’t change much. Others feel like they are much worse. So, really understanding, you know, what the trajectory of narcolepsy symptoms is like during pregnancy and what are predictors of people that might actually see improvement in symptoms versus worsening symptoms during pregnancy.
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