We commissioned qualitative research to inform Narcolepsy UK’s response to the National Institute of Health and Care Excellence (NICE) consultation for oveporexton. NICE will decide whether this new drug represents value for money for use by the NHS in England and Wales. Oveporexton will also be assessed by the Medicines and Healthcare products Regulatory Agency (MHRA) to make sure it is effective and safe.
We conducted detailed interviews with 10 people with Type 1 Narcolepsy to understand the need for new treatment options and hopes for this potential new treatment. All participants had tried at least two drugs for excessive daytime sleepiness.
Whilst current treatment is valued, it’s far from sufficient
People have a bittersweet relationship with their current treatment. Many say they couldn’t live without it, yet it falls short of allowing them to live a more fulfilled life. Many people give examples of compromises with work, family and social life despite daily medication.
“I’m thankful for my treatment, ….but I can’t live a normal, completely normal life”
“I would love to work, I would love to read, I would love to study but these things just seem impossible”
“It’s not just a one-off… I miss out on absolutely loads”
People need help with all parts of narcolepsy, not just staying awake during the day
While current treatments can improve daytime alertness, many people continue to struggle with other aspects of narcolepsy. Common challenges include disrupted nighttime sleep (broken sleep, night terrors, sleep paralysis); tiredness that means at least one daily nap is common; concentration and memory problems that interfere with work or studies and cataplexy which requires add-on antidepressants. With a lack of ‘true’ narcolepsy medications people feel they are borrowing other conditions’ medicines and not getting the best possible results. — ” We’re getting bits and pieces from other people’s medication”
Side effects, such as headaches, anxiety, irritability, can limit treatment options often leading to discontinuations and delays in achieving optimal care. Furthermore, treatment often loses effect over time, raising concerns about running out of options and uncertainty for the future.
A treatment that tackles more than one narcolepsy symptom gives people real reason to feel hopeful
We provided participants with basic information about oveporexton, based on publicly available information at the time of the research. Participants reacted very positively to this information. They were encouraged by the fact that it is designed specifically to address the root cause (orexin deficiency) of Type 1 Narcolepsy as well as by evidence suggesting improvements across a range of symptoms, including daytime sleepiness, cognition and cataplexy1. This could potentially enable people to live a more normal life.
“This offers hope…it doesn’t have to be perfect it just needs to allow people to experience a smidgen of normality and improve your day-to-day function”
While a few had questions about safety and long-term use, most were focused on learning more about the treatment rather than expressing concerns about using it. Knowing that the vast majority of people in the trial chose to continue into follow-up was taken as a strong positive safety signal.
Final thoughts
These findings closely align with Narcolepsy UK’s Charter which describes the right of people with narcolepsy to live a fully rounded life. Narcolepsy UK will continue to follow developments closely and advocate for timely access to innovative treatments that meet the needs of the community.
Source: Narcolepsy UK Market Research — August 2026, 10 in-depth interviews with Type 1 Narcolepsy patients