Latinos Making a Difference in Epilepsy
Epilepsy News From: Friday, October 14, 2022
Health disparities continue to be a major issue for people of color and underserved populations, including Latinos. One challenge is navigating the health system and finding information about different treatment options available to them in their native language. However, there are many efforts within the epilepsy community that aim to address these disparities and promote strategies that will help close the gap in access to epilepsy care, educational materials, and clinical trials.
As we wrap up Hispanic Heritage Month, we celebrate Latinos who are working to improve outcomes and bringing new treatments to market, as well as organizations helping to reduce disparities within the Hispanic epilepsy community.
Andres Kanner, M.D. F.A.N.A., F.A.A.N, F.A.E.S
Dr. Kanner is an epileptologist born in Mexico City to Polish parents. He moved to the United States to complete residencies in psychiatry and neurology, as well as a fellowship in epilepsy and clinical neurophysiology. As chief of the Epilepsy Division and director of the Comprehensive Epilepsy Center of Excellence at the University of Miami, Miller School of Medicine, Dr. Kanner has seen his fair share of Latinos who are striving for seizure control. He is also very familiar with some of the challenges facing Latinos — and other communities of color — because of structural barriers and health disparities within the healthcare system.
While Dr. Kanner’s patients have access to quality care and the latest treatments available through the University of Miami Health System, not everyone understands the benefits of anti-seizure medicines or other treatments, such as surgical options. As he points out, when engaging with non-English speaking patients, healthcare providers should consider cultural sensitivities, particularly around beliefs that may impact a person’s health and wellbeing.
“Latinos tend to be reluctant to certain treatment options. The hesitation is a cultural issue, and we as doctors need to take time to educate our patients about epilepsy and how best to achieve seizure control.”
Chief Executive Officer, Neuroelectrics
Maiques is a Spaniard businesswoman whose vision to develop devices that monitor and stimulate the brain became a reality when she and her husband founded Neuroelectrics in 2011. Her goal — to treat drug-resistant epilepsy with precision medicine. Following 10 years of neuroscience research, she wanted to better understand how the brain works and turn that research into a device that can help people with brain disorders.
Maiques recognized an enormous unmet medical need for a new, noninvasive approach to treat drug-resistant epilepsy. She and her team of researchers with experience in brain modeling set out to create Starstim, a device based on artificial intelligence that records brain activity and applies stimulation into the brain. The wearable cap can customize treatment protocols based on personalized brain models and the patient’s physiological data. Starstim is currently in clinical trials in the United States, Europe, and Mexico.
“We believe that our ability to adapt treatment to each patient based on their specific focus and anatomy will provide the maximum clinical benefit. We are hopeful that the Starstim will be approved in the U.S. in the next 2-3 years and broadly available to drug-resistant focal epilepsy patients soon thereafter.”
UCB has been working to improve health outcomes in the epilepsy community for decades, and over the last few years the company has been thinking about how the epilepsy journey varies for different people, such as Latinos.
Although UCB has always had Spanish-language materials available, they realized that they didn’t fully understand the unique challenges experienced by Latinos with epilepsy in the U.S. To that end, UCB developed a multi-phased research project called Hispanic CARE (Cultural Attitudes Regarding Epilepsy) in which they interviewed health professionals, patients, families, and Hispanic American colleagues. Key insights, which were presented at the American Epilepsy Society meeting last year, centered on the role of the family in epilepsy care.
UCB found that while most U.S. communities typically have individuals on a journey with epilepsy, in the Latino community, the entire family is on a journey together. Findings from their research also showed that accommodating different levels of acculturation and language proficiency is key to engaging different family members.
“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. As a company, we feel that if we could learn more about Latinos in the epilepsy community, we could do a better job at supporting them in their journey with new resources and solutions.”
Salvador Rico, M.D., PhD
Chief Medical Officer, Encoded Therapeutics
Dr. Rico and his team at Encoded are developing a potential one-time, disease-modifying gene regulation therapy targeting the underlying cause of SCN1A+ Dravet Syndrome. Dravet occurs in approximately 1 in 16,000 births worldwide. It is the largest genetically caused epilepsy. Seizures typically start in the first year of life of a previously healthy baby. People living with Dravet can experience frequent, prolonged, and hard-to-treat seizures. They may also have cognitive delays, sleep abnormalities, motor impairment, and behavioral challenges. Encoded’s investigational therapy, ETX101, is designed to potentially address this full range of disease manifestations.
As Encoded prepares for its upcoming clinical trials, Dr. Rico’s team is taking several steps to ensure representation from multicultural communities, including Latinos. Clinical trials often lack participation from ethnic and racial community groups. This leads to the perpetuation of health disparities and hampers the study results. That’s why Dr. Rico and team are creating study-related materials in different languages, including Spanish. They also plan to offer a variety of support services at trial sites to help remove other barriers to participation.
“Our team at Encoded will continue to have open and honest discussions with the patient community and healthcare providers, to learn and adapt from their experiences and ensure representation in the clinical trials from a broad number of states and countries with diverse demographics.”