Equitable Care

UCB believes in epilepsy care equity for all

Every person deserves the care they need to live well

Disparities in Care   

Economic Burden of Epilepsy   

Our Mission for Epilepsy

Discover how UCB embraces the power of collaboration to consistently work towards improving patient outcomes and experiences.

brain 
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Disparities in Care

The Glaring Need in Social Determinants of Health

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 to4:

  • Healthcare Services
  • Medications
  • Job Opportunities
  • Food
  • Housing
  • Income Security
  • Social Support
  • Others

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.

sdoh-factors

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.

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Collapse All | Expand All

  • 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 spirits5
  • Cultural groups (eg, Hispanic/Latinx) may hold traditional beliefs about epilepsy, preventing them from pursuing Western medical treatments5
Cultural_Barriers

LBGTQ_Discrimination_1

Health insurance, employment, housing, and social program access

is limited due to legal discrimination7 

Limited_research

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

Shortage of healthcare providers

who are knowledgeable and culturally competent in LGBTQIA+ health isa problem7

56% 32% 50% less People with epilepsy have lower odds of employment 9 and earn approximately in annual wages compared to those without epilepsy 9 of adults with epilepsy are unable to work 10 Epilepsy vocational rehabilitation programs are very few, and access to work remains an obstacle for those with epilepsy 11
of newly diagnosed epilepsy patients don’t receive treatment until 1 year after diagnosis 12 of newly diagnosed epilepsy patients remain untreated at 3 years following diagnosis 12 ~50% 37% Stats on the Treatment Gap In the US:
56% ~50% 37% 32% 50% People with epilepsy have Stats on the Treatment Gap In the US: of newly diagnosed epilepsy patients don’t receive treatment until 1 year after diagnosis 12 of newly diagnosed epilepsy patients remain untreated at 3 years following diagnosis 12 and earn approximately in annual wages compared to those without epilepsy 9 lower odds of employment 9 of adults with epilepsy are unable to work 10 Epilepsy vocational rehabilitation programs are very few, and access to work remains an obstacle for those with epilepsy 11 less

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 healthcare.5

  • 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
  • Those living with epilepsy have a 2x higher rate of anxiety and depression9
social stigmas

~8x greater rate of epilepsy and seizures in thehomeless population14 16% of those with active epilepsy are uninsured17 30% of those with active epilepsy live in poverty5 4 in 10 children with epilepsy live in homes at or closeto poverty level15 Food insecurity is associated with mental health conditions such as anxiety and depression, especially among low-income populations16 Poverty restricts opportunities for quality care and treatment for epilepsy, leading to worse health outcomes5
poverty-financial-challenges

  • Epilepsy is more common among minorities5
  • Minorities have more limited access to healthcare and tend to receive a lower quality of care5

Surgery & Emergency

Room Visits

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  

Access to Specialists

Only:

9%

of African American patients

and

24%

of Hispanic patients

have access to an epilepsy specialist compared to 
57% of White patients6 

You + Us = Improved Population Health

Health equity needs to be prioritized. Measures to reduce disparities need action. Through collaboration with others, we are working to fill these gaps in care. 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.

Clinical care is only one factor impacting health outcomes

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 life.19

Estimated proportion of factors that influence health outcomes

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:

sdoh-factors
Living and working conditions
sdoh-factors
Patient behaviors
sdoh-factors
Self-care
sdoh-factors
Healthcare access

Addressing these SDOH factors and pathways may improve access to care and population health outcomes, helping to fulfill health equity goals along the way.

Economic Burden of Epilepsy

The economic costs of epilepsy are High

Epilepsy isn’t only a burden on people; it’s a burden on our entire healthcare system.

~$28 billion

in estimated annual US epilepsy-related costs22*

Epilepsy-specific costs are 2.2x higher for uncontrolled epilepsy vs stable epilepsy 22†‡

Patients with uncontrolled vs well-controlled epilepsy have:

5x

higher rate

of ED visits and inpatient stays22§

2.2x

higher risk

of epilepsy-related hospitalizations23

*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.

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Helpful Resources

Resources located in the Cultural Humility Toolkit are intended to help and guide both Healthcare Providers and minority patients. The Toolkit contains resources to help patients with epilepsy find the right doctor and have successful healthcare appointments.

Healthcare Providers will find a conversation guide, to help facilitate a culturally competent conversation with their minority patients with epilepsy. There are sample questions for both providers and patients. Feel free to choose the questions that best fit your situation.

Institution/ Provider Checklist for Patients

DOWNLOAD 

Conversation Starter for Patients

DOWNLOAD 

Conversation Starter for HCPs

DOWNLOAD 
References
  1. Szaflarski, M. Social Determinants of health in epilepsy. Epilepsy Behav. 2014;41:283-289.
  2. England MJ, Liverman CT, Schultz AM, Strawbridge LM, eds. Epilepsy Across the Spectrum. Promoting Health and Understanding. Washington, DC: Institute of Medicine of the National Academies. The National Academies Press; 2012.
  3. Healthy People 2030. Social Determinants of Health. Accessed November 3, 2021. https://health.gov/healthypeople/objectives-and-data/social-determinants-health
  4. Office of Disease Prevention and Health Promotion. Social determinants of health. Accessed October 20, 2021. https://www.healthypeople.gov/2020/topics-objectives/topic/social-determinants-of-health
  5. Szaflarski M, Wolfe JD, Tobias JGS, Mohamed I, Szaflarski JP. Poverty, insurance, and region as predictors of epilepsy treatment among US adults. Epilepsy Behav. 2020;107:107050.
  6. Nathan C, Gutierrez C. FACETS of health disparities in epilepsy surgery and gaps that need to be addressed. Neurology. 2018;8(4):340-345.
  7. Healthy People 2020. Lesbian, Gay, Bisexual, and Transgender Health. Accessed November 3, 2021. https://www.healthypeople.gov/2020/topics-objectives/topic/lesbian-gay-bisexual-and-transgender-health
  8. Rosendale N, Ostendorf T, Evans D, Weathers A, et al. American Academy of Neurology members’ preparedness to treat sexual and gender minorities. Neurology. 2019;93:159-166.
  9. Libby AM, Ghushchyan V, McQueen RB, Slejko JF, Bainbridge JL, Campbell JD. Economic differences in direct and indirect costs between people with epilepsy and without epilepsy. Med Care. 2012;50(11):928-933.
  10. Kobau R, Cui W, Kadima N, Zack MM, et al. Tracking psychosocial health in adults with epilepsy-Estimates from the 2010 National Health Interview Survey. Epilepsy Behav. 2014;41:66-73.
  11. Fraser RT, McMahon BT, Wiggins A, Clift A, Hunter-Banks S. Consideration in developing a specialized epilepsy employment program: a sponsor’s playbook. Epilepsy Behav. 2014;102:106698.
  12. Kalilani L, Faught E, Kim H, et al. 2019. Assessment and effect of a gap between new-onset epilepsy diagnosis and treatment in the US. Neurology. 2019;92:e2197-e2208.
  13. National Association of Epilepsy Centers. Find an Epilepsy Center. 2021. Accessed November 3, 2021. https://www.naec-epilepsy.org/about-epilepsy-centers/find-an-epilepsy-center/
  14. Doran E, Barron E, Healy L, O’Connor L, et al. Improving access to epilepsy care for homeless patients in the Dublin Inner City: a collaborative quality improvement project joining hospital and community care. BMJ Open Qual. 2021; 10(2): e001367.
  15. Cui W, Kobau R, Zack M, Helmers S, et al. Seizures in children and adolescents aged 6-17 years – United States, 2010-2014. MMWR Morb Mortal Wkly Rep. 2015;64(43):1209-14.
  16. America’s Health Rankings. Health Disparities Report 2021. Accessed November 3, 2021. https://assets.americashealthrankings.org/app/uploads/2021_ahr_health-disparities-comprehensive-report_final.pdf
  17. Thurman D, Kobau R, Luo Y, Helmers S, et al. Health-care access among adults with epilepsy: The U.S. National Health Interview Survey, 2010 and 2013. Epilepsy Behav. 2016;55:184-188.
  18. Chesaniuk M, Choi H, Wicks P, Stadler G. Perceived stigma and adherence in epilepsy: evidence for a link and mediating processes. Epilepsy Behav. 2014;41:227-231.
  19. Robert Wood Johnson Foundation. County Health Rankings Model. 2021. Accessed November 3, 2021. https://www.countyhealthrankings.org/explore-health-rankings/measures-data-sources/county-health-rankings-model
  20. Agency for Healthcare Research and Quality. White Paper: Redefining Primary Care for the 21st Century. Accessed November 3, 2021. https://www.ahrq.gov/ncepcr/tools/workforce-financing/white-paper.html#tab2
  21. Data on file. UCB, Inc., Smyrna, GA.
  22. Data on file. Optimizing Epilepsy Care. UCB Health. 2019.
  23. Cramer JA, Zhixiao JW, Chang E, Powers A, et al. Healthcare utilization and costs in adults with stable and uncontrolled epilepsy. Epilepsy Behav 2014;31:356-362.