In the United States, nearly 3.5 million individuals, including about 460,000 children, live with epilepsy. Patients with epilepsy face numerous challenges, such as access to care and impacts on mental health. In fact, adults with epilepsy are twice as likely to report depression compared to those without the condition. In response, UCB and the Morehouse School of Medicine (Morehouse SOM) are collaborating to enhance healthcare for epilepsy patients in Georgia through community-based care pathways.

This partnership emphasizes sustainability and data-driven solutions, leveraging Community Health Workers (CHWs) to connect patients with essential resources. We spoke with Patty Fritz, Head of U.S. Corporate Affairs at UCB, and Dr. Quarells, Professor at the Morehouse School of Medicine, about this collaboration and their shared commitment to supporting epilepsy patients.

Why focus on epilepsy?

Dr. Quarells: Epilepsy is a chronic condition with so many difficult and frustrating points all along the patient journey. I’ve seen patients struggle with everything from finding the right doctor, to managing the side effects of their medicines, to dealing with depression and anxiety because of their condition.

With over 110,000 epilepsy patients in Georgia, we at Morehouse SOM have committed to helping these patients, starting with our Epilepsy Community Advisory Board to promote epilepsy self-management in underserved communities.

Patty Fritz: UCB has always had a long-standing commitment to support patients with unmet needs like those with epilepsy. UCB has long been known as an "epilepsy company," and we pride ourselves on all we do to better patient outcomes beyond medication, like our production of the Epilepsy Advocate magazine and the annual Epilepsy Scholarship. And with Georgia being near and dear to our hearts, this partnership felt like a natural fit.

Dr. Quarells: I still remember my first introduction to UCB. I remember talking to Terrence, a local UCB representative, and seeing his genuine, authentic interest in the lives and outcomes of people in the epilepsy community. After this conversation, I knew it wasn’t about pushing medications for them, it was about bettering outcomes, and I knew this partnership would work.

What are some of the barriers to care that people with epilepsy in Georgia face?

Patty Fritz: Knowing how far-reaching the barriers to care and their impacts are, we completed a large-scale study to pinpoint access roadblocks. One of the biggest things we saw was the massive disparity between people who saw a specialist and people who didn’t. Access to a specialist results in patients getting effective treatment faster and better outcomes.

Dr. Quarells: As Patty said, access to a specialist is a huge issue. So many of the people we’ve worked with have talked about issues finding and accessing specialists. Some of them also face major travel concerns as specialists may not be local to them and individuals with epilepsy are not allowed to drive for 6 months after a seizure.

Patty Fritz: On top of that, so many people face insurance coverage issues and access to a specialist, especially those with Medicaid. 
Dr. Quarells: That’s correct. And the lack of access to specialists often leads people to seeking care in ERs, which is suboptimal, expensive, and burdensome to Georgia's healthcare infrastructure. This is exacerbated by ongoing hospital closures across both rural and urban parts of Georgia.

Can you talk about the proposed Community Health Worker solution?

Patty Fritz: I cannot emphasize enough that improving care coordination must be system wide. Our goal is to get primary care and neurology working together and make sure patients are connected to behavioral health and non-medical resources. Our plan is for patient navigators to improve care coordination between primary care providers and neurologists and to have CHWs connect patients with comprehensive care and support outside of the health system.

Dr. Quarells: CHWs, being local, understand the real challenges underserved populations in Georgia face. They provide a trusted support system, addressing issues related to social determinants of health like transportation and employment concerns, and helping patients understand and voice complex medication side effects. CHWs bridge gaps and reduce the emotional burden on people and their care partners, improving overall outcomes.

Patty Fritz: We are also hoping that CHWs can help identify frequent barriers to care and uncover unknown issues. Additionally, reducing the emotional burden is crucial, as there's a direct link between depression, pain, and clinical outcomes. CHWs can be such an important tool to help improve mental health and quality of life for patients and families. Economically, CHWs are cost-effective, equivalent to a single ER visit but yielding better outcomes.

Dr. Quarells: Patty makes such a great point about the emotional burden. Stigma and emotional pressure around epilepsy often hinder getting help, creating a cycle. Access to care is essential. CHWs provide comfort and connect people to needed resources. At the end of the day, it’s all about having someone that people feel comfortable with who can connect them to the resources they need.

Can the Community Health Worker model be scaled and expanded to other states?

Patty Fritz: Yes, our goal is to expand this model to other states and disease areas. We're developing a scalable framework for Epilepsy Care Coordination to bridge gaps and enhance outcomes across the U.S. We're in discussions with Epilepsy Foundations in Florida, New England, Texas, and Minnesota to learn from existing CHW models and explore future collaborations. We are committed to continuing this partnership and improving the lives and outcomes of people with epilepsy across the U.S.

Dr. Quarells: We are thrilled to continue partnering with UCB and to evolve our CHW programs throughout Georgia and the rest of the U.S. We are also constantly brainstorming and learning from both the data and real-world experiences, as well as exploring additional solutions.

^{Kobau R, Luncheon C, Greenlund KJ. About 1.5 million community-dwelling US adults with active epilepsy reported uncontrolled seizures in the past 12 months, and seizure control varied by annual family income — National Health Interview Survey, United States 2021 and 2022. Epilepsy Behav. 2024 Aug; https://pubmed.ncbi.nlm.nih.gov/38820685/}

^{Zack MM, Kobau R. National and State Estimates of the Numbers of Adults and Children with Active Epilepsy — United States, 2015. MMWR Morb Mortal Wkly Rep. 2017;66(31):821-825. doi:10.15585/mmwr.mm6631a1.}

^{Kwon CS. Psychiatric comorbidities in persons with epilepsy. JAMA Neurol. 2024;81(12):1523-1531. doi:10.1001/jamaneurol.2024.3976.}

^{Borghs S, Beaty S, Parekh W, et al. Cost of epilepsy-related health care encounters in the United States. J Manag Care Spec Pharm. 2020;26(12):10.18553/jmcp.2020.20111. doi:10.18553/jmcp.2020.20111.}

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