Every person deserves the care they need to live well.
Discover how UCB embraces the power of collaboration to consistently work towards improving patient outcomes and experiences.
PLAY
We at UCB find the established gaps among social, economic, racial, age, ethnic, gender, and geographical groups that affect millions of Americans living with epilepsy1,2 to be simply unacceptable. Building our team and culture of curiosity that strives to understand where, and why, these gaps exist keeps us focused on where we can make the biggest impact. Our insights inspire innovative programs. Our social listening delivers personalized resources. And our goal to raise the standard of care for Americans living with epilepsy starts by informing you.
Our commitment to bring meaningful change for health disparities in epilepsy is founded on deep observations, real-world research, and clinical data that reveal populations in need.
Social determinants of health (SDOH) are the conditions in the environments where people are born, live, learn, work, play, worship, and age that affect a wide range of health, functioning, and quality-of-life outcomes and risks.3
In general, SDOH factors may include access to healthcare services, medications, job opportunities, food, housing, income security, social support, and others.4
Those living with epilepsy are significantly impacted by SDOH because of the general misunderstanding and burden of their condition2
These patients deserve more visibility into the factors that limit their health and more ways to get the care they need. We are committed to leading that long-awaited change, and it starts with observing these needs in care disparities:
Click on each care disparity on the brain below to find out more about how they impact outcomes.
African Americans and Hispanics have:
Higher rates of hospitalizations and emergency room visits5
Lower rates of undergoing surgery (African Americans are 60% less likely)6
ONLY 2.4-5.9% of African American, Asian/Pacific Islander, and Native American patients had temporal surgery compared to 6.5% of White patients6
Only 9% of African American patients and 24% of Hispanic patients have access to an epilepsy specialist compared to 57% of White patients6
African Americans: Are 30% LESS LIKELY to see an outpatient neurologist5
In some cultures, it’s believed that a person with epilepsy is being punished for sins, has a lack of spiritual faith, is taking illegal drugs, or is possessed by spirits.5
Cultural groups (eg, Hispanic/Latino) may hold traditional beliefs about epilepsy, preventing them from pursuing Western medical treatments.5
Health insurance, employment, housing, and social program access is limited due to legal discrimination7
Limited research to support the effect of epilepsy medications on gender-affirming hormonal treatments8
~50% of clinicians recognize sexual orientation and gender identity (SOGI) as SDOH8
Shortage of healthcare providers who are knowledgeable and culturally competent in LGBTQIA+ health is a problem7
Over 40% feel SOGI shouldn’t be considered for neurological disease management8
People with epilepsy have 56% lower odds of employment
miss 3x as many work days
and earn approximately 50% less in annual wages compared to those without epilepsy9
32% of adults with epilepsy are unable to work vs 7% without epilepsy10
Epilepsy vocational rehabilitation programs are very few, and access to work remains an obstacle for those with epilepsy11
In the US:
~50% of newly diagnosed epilepsy patients don’t receive treatment until 1 year after diagnosis12
37% of newly diagnosed epilepsy patients remain untreated at 3 years from diagnosis12
Quality of care, pricing, and epilepsy specialist availability vary widely by geographic area. In rural locations, access to specialists is especially restricted, making location key in receiving adequate health care5
The map below shows epilepsy centers across the US. Notice the lack of epilepsy centers in the more rural states13
~8x greater rate of epilepsy and seizures in the homeless population14
30% of those with active epilepsy live in poverty5
4 in 10 children with epilepsy live in homes at or close to poverty level15
3 in 10 children with epilepsy live in homes without enough food15
Food insecurity is associated with mental health conditions such as anxiety and depression, especially among low-income populations16
16% of those with active epilepsy are uninsured 17
7/10 patients without insurance have a significantly lower likelihood of seeing an epilepsy specialist5
Poverty restricts opportunities for quality care and treatment for epilepsy, leading to worse health outcomes5
People living in poverty are less likely to use medications and are more associated with nonadherence5
1 in 3 students with epilepsy said that they had kept their epilepsy a secret because they did not want to be treated differently2
Lower levels of medication adherence and information retention are more common in those with a higher feeling of stigma18
The unpredictable nature of seizures, feelings of helplessness of those who witness them, and the ongoing misinformation about epilepsy have resulted in people with epilepsy being stigmatized and isolated2
Even when seizures are well controlled, internalized stigma can reduce quality of life2
Those living with epilepsy have a 2x higher rate of anxiety and depression9
Health equity needs priority. Measures to reduce disparities need action. And filling these gaps in care can be a reality when you work with us. Training physicians, nurses, and other healthcare workers on the social determinants of health is a tangible step to promote more equitable health outcomes. Let’s start broadening awareness of SDOH in epilepsy not only today, but every day.
About half of an individual's outcome is comprised of socioeconomic factors and physical environment — meaning factors outside of healthcare delivery impact patient quality and length of life19
40% Social and economic factors
30% Health behaviors
20% Clinical care
10% Physical environment
Examination of mediating pathways through which SDOH influences epilepsy outcomes is needed to bring meaningful change.1 These pathways include:
Addressing these SDOH factors and pathways may improve access to care and population health outcomes, helping to fulfill health equity goals along the way.
The Quintuple Aim model serves as our foundation for shifting the focus from point-of-care health to optimizing overall health for populations.20
Select 1 of the 5 key areas of focus to see how it addresses social determinants of health in those with epilepsy.
The Quintuple Aim sets the stage for identifying patients with epilepsy who have suboptimal health outcomes due to disparities in care. At UCB, we continuously update our goals by listening to the needs of patients and care teams to move epilepsy care forward.
Patient Insights
The Hope and Trust studies were 2 qualitative research studies conducted by UCB to gain a deep understanding of what it’s like living with epilepsy.
In each case, the researchers were able to document numerous ways, beyond the obvious threat of having a seizure, that epilepsy was taking value from these patients’ lives and keeping them from their full health potential.
The results were distilled down into 5 insights21:
*The study also included 28 caregivers and 32 physicians. †The study also included 18 caregivers.
When it comes to creating patient value in epilepsy, the challenges have never been greater. At UCB, our mission in epilepsy is to achieve individualized solutions for individual needs to help bring patients their ideal outcome.
To support our mission, we’ve developed a tailored information hub for patients and populations in need of epilepsy education. Share this content with your patients to start constructive conversations.
Epilepsy isn’t only a burden on people, it’s a burden on our entire healthcare system—especially when it’s uncontrolled or misdiagnosed. UCB is dedicated to help alleviate the immense impact epilepsy has on hospitals and care teams, and it starts with knowing the facts.
~$28 billion in estimated annual US epilepsy-related costs22* Epilepsy-specific costs are 2.2x higher for uncontrolled epilepsy vs stable epilepsy22†‡
5x higher rate of ED visits and inpatient stays22§
2.2x higher risk of epilepsy-related hospitalizations23
7x longer hospital stays22
>$7K epilepsy-related healthcare resource utilization costs (PPPY)22§
Nearly 1.4 million hospital stays linked to diagnosis of seizures22
~$1.8 billion in hospital costs22
~65% of ED visits result in hospitalization22
* Estimate is based on a reported cost of $26 billion in 2013 converted to 2018 dollar value.22 † Retrospective claims study conducted between January 1, 2007, and December 31, 2009, with MarketScan commercial database representing all major regions of the United States.22 ‡ Uncontrolled: Added seizure medication to an existing regimen during year of observation; Stable: No change in seizure medication for at least 1 year.22 § Adjusted for baseline measures.
From: Higher HRU and Costs With Uncontrolled Epilepsy Study Design: Retrospective, longitudinal, matched-cohort analysis. Study Sample: US adults ≥18 years of age; 110,312 Medicaid population (matched cohorts, n=3454); 36,529 employer population (matched cohorts, n=602). Limitations: Work-loss estimates based on subset of commercial claims, potential selection bias per group assignment, excluded less severe seizures, adjusted to 2009 dollars.
