Listening directly to people living with narcolepsy type 1 (NT1) is essential to understanding and addressing barriers to care. The Stigma in Narcolepsy Interview Project, developed by VOZ for our client, Takeda, focused on gathering patient insights to better understand how stigma affects the day-to-day lives of people living with NT1.
By conducting 35 interviews across seven countries, these conversations provided important insights into the social and emotional challenges patients face. Interviewees shared how being misunderstood or not believed by family, friends, and even healthcare providers, can lead to delayed diagnosis, lack of confidence in care management, and reduced trust and openness with others. This research highlights why reducing stigma is not just about elevating public awareness of NT1, it is about improving clinical care, strengthening psychosocial support, and ensuring that people with NT1 feel seen and heard.
We interviewed Kinsey Moore, Director of Client Services at VOZ, to learn more about this work, and its goals, which were to understand the impact of stigma on people living with NT1 and explore the need for resources and support services to empower patients to navigate and minimize stigma more effectively.
- Can you explain the goals of the project and why this type of work is critical for the patient community?
The issue of stigma and its consistent impact on people living with NT1 was raised during an Expert Patient Council hosted by VOZ and Takeda in 2024. Recognizing how deeply stigma affects this community, we partnered with Takeda to better understand patients’ experiences, conducting double-blinded global interviews focused on how patients encounter stigma and how it shapes their care-seeking behaviors. The ultimate goal of the project was to understand how patients can be supported to better minimize stigma, whether that be through awareness campaigns, tailored resources, or educational opportunities for healthcare professionals (HCPs).
Hearing directly from people with NT1 was essential to uncover the challenges they face and the coping strategies they use. These insights could only come from the patient community, and incorporating their voices is the only way to move toward solutions that truly benefit them.
- What can you say about the role of stigma as a barrier to fully supporting patients?
Many people hesitate to share their experiences if they fear being judged or having their symptoms dismissed. In our interviews, patients described extreme measures they took to avoid this kind of judgment. This can severely affect both their mental health and the care they receive. When patients feel stigmatized by healthcare providers, they are less likely to disclose symptoms such as auditory hallucinations or sleep paralysis. This is key information that could support a quicker and more accurate diagnosis.
The fear of being labeled as “crazy” or misdiagnosed with a psychiatric condition often led patients to withhold important details from their doctors. This problem is made worse by the general lack of knowledge about NT1, especially among primary care providers, leaving patients with little confidence in their care and forcing them to hide or minimize their symptoms.
- What best practices should be followed when engaging with patients?
The insights patients share about their condition are invaluable, and they deserve to be treated with the respect and consideration their contributions warrant. To honor this, we must prioritize making every engagement as easy and supportive as possible. This includes:
- Accommodating patient schedules
- Providing consistent communication and feedback (when appropriate)
- Thanking patients for their time
- Ensuring honoraria payments are processed quickly
By focusing on the patient experience, we can demonstrate the value we place on their stories and perspectives.
It is also critical to meet patients where they are. For people with NT1, symptoms such as excessive sleepiness and difficulty maintaining focus can make conversations more challenging. As patient advocacy experts, we made it a priority to create a comfortable environment by validating their lived experiences and allowing them to share the parts of their journey they felt were most important.
