Working Toward a More Equitable Future: Addressing Barriers in the Hispanic Epilepsy Community
Epilepsy, an often life-altering disease involving unprovoked seizures over time, affects an estimated 50 million people globally and often requires specialized care and medical treatment. In the US, Hispanics
are one of the largest subpopulation of people living with epilepsy – more than 700,000 people – yet there are persistent discrepancies in their access to care, treatment, and patient outcomes compared with other populations. These discrepancies start in childhood and persist through their epilepsy journey. Hispanic children with epilepsy (age 6 months – 15 years) were less likely to respond to epilepsy medications and typically experience a longer time to achieve seizure remission than white non-Hispanic children (8 years vs. 5.6 years). Epilepsy is a complex neurological disease that is typically treated by specialists, yet less than a quarter of Hispanic patients have access to an epilepsy specialist versus 57% of white nonHispanic patients.
To better understand the experiences of Hispanic people with epilepsy and to improve our collective effort to break down barriers to equitable health outcomes, UCB is working with patients and their families as well as health equity experts. As a first step, UCB’s Population Health team gathered insights from healthcare professionals working in communities delivering care to largely Hispanic populations. Next, they convened patient focus groups to hear directly from Hispanic people with epilepsy, specifically of Mexican heritage, to learn more about their experiences and what resources may be beneficial. In these focus groups, two key obstacles emerged: cultural misunderstandings and oversights, and a dearth of native language disease information and resources.
The focus groups cited that misunderstandings and oversights in their care experience are often triggered by misinterpretations due to language and culture as well as a deeply rooted anxiety around the complexities of patient-provider engagement. Hispanic community members shared that epilepsy is often taboo, potentially impacting whether or not people proactively seek care and may therefore contribute to delayed diagnosis, misdiagnosis, or underdiagnosis. According to our focus group participants, the Hispanic culture prioritizes family, sharing that the Hispanic culture typically includes a greater family circle than other subpopulations and more often live in multi-generational family units. Because of this unique role of family, patient care recommendations are not always reflective of the patients’ day-to-day life and at-home dynamics, falling short of treating the whole person vs. just their condition.
Digging deeper into the language barrier, patients shared that they and their caregivers would prefer to have translations available and materials that feature patients like them and also reflect cultural nuances. Language barriers can impede connections and information shared with healthcare providers and caregivers. While more collaborative research needs to be done to understand nuances due to heterogeneity of the Hispanic population, these focus groups helped to reveal consistent and pervasive gaps in care that negatively impact epilepsy care within the Hispanic community.
To help find ways to facilitate healthcare provider and patient interactions, UCB is working with health equity specialists to understand best practices for creating culturally competent resources so Hispanic people with epilepsy can feel confident going into healthcare appointments. Our new materials include
information in conversational Spanish and English, integrate messaging that is relevant for Hispanic populations and feature content that takes the influence of the Hispanic family dynamic into consideration. Imagery in the materials will feature diverse patients and the writing will be easy to read and understand. It is our hope that more materials like these will become available across epilepsy care and beyond, and that our continued partnership with experts and Hispanic people with epilepsy will make a meaningful impact towards closing care gaps.
As we work to address treatment barriers and empower patient communities, we will continue to look inward to evolve and improve our processes as well. This includes rethinking clinical trial design and
recruitment to challenge ourselves as well as our site partners to have real-world representation of patients in our trials so we can adequately understand the safety and efficacy of products for those living with the condition in the real world.
Despite the existing barriers Hispanic people with epilepsy face, there are success stories that set an example for what comprehensive and adequate care can achieve. Leysla, a Hispanic, first-generation college graduate from Houston, TX, has persevered because of receiving appropriate care and the support of her family. Her epilepsy is under control, thanks to her early diagnosis and ongoing medical management, and Leysla is now pursuing a master’s degree in education. As a recent recipient of the
UCB Family Epilepsy Scholarship Program, she aims to pursue a PhD in education and ultimately work as a dean at a university, helping others with healthcare disabilities throughout their higher education
journey. Her positive care experience should be the standard, not the exception, to being Hispanic and living with epilepsy in the US. It is UCB’s vision to help all people living with epilepsy thrive – just like Leysla – through quality medical treatment, patient-centered innovations, and advanced technologies. To help achieve this, we are taking steps to ensure we contribute to a more equal future for Hispanic people with epilepsy.