Epilepsy, an often life-altering disease involving unprovoked seizures over time, affects an estimated 3.4 million people in the United States and often requires specialized care and medical treatment. Hispanics are one of the largest subpopulations 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.1-5 These discrepancies start in childhood and persist through their epilepsy journey. Hispanic children with epilepsy (age 6 months – 15 years) are 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).4 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, compared to 57% of white non-Hispanic patients.5
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.6 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 that patient’s day-to-day life and at-home dynamics, falling short of treating the whole person versus just their condition.6
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 that also reflect cultural nuances. Language barriers can impede connections and information shared with healthcare providers and caregivers.6 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.
In an effort to empower the Hispanic epilepsy community, UCB has launched bilingual and culturally competent materials for BRIVIACT® (brivaracetam) CV, indicated for the treatment of partial-onset seizures in patients one month of age and older, and will be pulling this through to our full portfolio of epilepsy medicines moving forward. 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 in our continued partnership with experts and Hispanic people with epilepsy these materials 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 U.S. It is UCB’s vision to help all people living with epilepsy thrive – just like Leysla – whether through quality medical treatment, patient-centered innovations, or advanced technologies. To help achieve this, we are taking steps to ensure we contribute to a more equal future for Hispanic people with epilepsy.
About BRIVIACT® (brivaracetam) CV
BRIVIACT was approved in the U.S. in 2016 as an add-on therapy for adult patients with partial-onset seizures. BRIVIACT was approved as monotherapy for adults in September 2017, and as monotherapy or adjunctive therapy in patients four years of age and older with partial-onset seizures in 2018. In August 2021, BRIVIACT was approved for the treatment of partial-onset seizures in patients down to one month of age. BRIVIACT is available in three formulations: oral tablets, oral solution, and intravenous (IV) injection. More information is available at Drugs@FDA: FDA-Approved Drugs.
BRIVIACT INDICATION AND IMPORTANT SAFETY INFORMATION
BRIVIACT® (brivaracetam) CV is indicated for the treatment of partial-onset seizures in patients 1 month of age and older.
BRIVIACT is associated with important warnings and precautions including suicidal behavior and ideation, somnolence, fatigue, dizziness, disturbance in gait and coordination, psychiatric adverse reactions including nonpsychotic and psychotic symptoms, and hypersensitivity reactions (bronchospasm and angioedema). BRIVIACT is contraindicated in patients with a prior hypersensitivity reaction to brivaracetam or any of the inactive ingredients.
In adult adjunctive therapy placebo-controlled clinical trials, the most common adverse reactions (at least 5% for BRIVIACT and at least 2% more frequently than placebo) were somnolence and sedation, dizziness, fatigue, and nausea and vomiting symptoms. Adverse reactions reported in clinical studies of pediatric patients were generally similar to those in adult patients. Adverse reactions with BRIVIACT injection in adult and pediatric patients were generally similar to those observed with BRIVIACT tablets. Other adverse events that occurred in adult patients who received BRIVIACT injection included dysgeusia, euphoric mood, feeling drunk, and infusion site pain.
BRIVIACT is a Schedule V controlled substance.
Please refer to full Prescribing Information.
For additional medical information about BRIVIACT, patient assistance, or any other information, please visit our website or call ucbCARES® at 1-844-599-2273.
1. Centers for Disease Control. Epilepsy Data and Statistics. https://www.cdc.gov/epilepsy/data/index.html. Accessed 9 November 2021.
2. United States Census Bureau. U.S. population. https://www.census.gov/. Accessed 9 November 2021.
3. United States Census Bureau. Race and Ethnicity in the United States: 2010 Census and 2020 Census. https://www.census.gov/library/visualizations/interactive/race-and-ethnicity-in-the-united-state-2010-and-2020-census.html. Accessed 9 November 2021.
4. Gregerson, C., Bakian, A. V., Wilkes, J., Knighton, A. J., et al. Disparities in Pediatric Epilepsy Remission Are Associated With Race and Ethnicity. Journal of Child Neurology. 2019;34(14):928–936. https://doi.org/10.1177/0883073819866623
5. Nathan, C. L., & Gutierrez, C. FACETS of health disparities in epilepsy surgery and gaps that need to be addressed. Neurol Clin Practice. 2018;8(4):340–345. https://doi.org/10.1212/CPJ.0000000000000490
6. Data on File, UCB, Inc. UCB Hispanic CARES Research, 2021.
BRIVIACT® and ucbCARES® are registered trademarks of the UCB Group of Companies.
©2021 UCB, Inc., Smyrna, GA 30080. All rights reserved.
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