By: Maura Toner
Despite epilepsy being one of the most common neurological disorders, patients often experience delays in diagnosis, lengthy referral times, ineffective medication, and disorganized co-management between various doctors and providers, among others. Finding affordable and convenient access to health care is paramount for the wellbeing of people battling epilepsy, yet the Epilepsy Foundation estimates about 30-40% of individuals with treatable epilepsy live with uncontrolled seizures. While significant progress has been made to improve the quality and access of epilepsy care, including developing better seizure medications and surgical techniques, there is ample opportunity to improve care.
Quality and efficiency of epilepsy care is of such importance because epilepsy affects millions of individuals in the United States; according to the CDC, 1.2% of the 2015 United States population had active epilepsy, amounting to 3 million adults and 470,000 children. Active epilepsy is defined as having a reported history of doctor-diagnosed epilepsy/seizure disorder and are either taking medication to control it or had one or more seizures in the past year. When someone has their first seizure, they often go to an emergency room or primary care provider or can be referred to a general neurologist, epileptologist or seizure clinic, but there is extreme variability and lack of data on referral patterns. Behavior patterns when seeking healthcare is also widely variable on numerous factors like age, location, insurance, presence of comorbidities, personal preferences, social and demographic factors, etc.
Seeking epilepsy care is far from universal, but surveys have found some commonalities: A community-based survey of those with epilepsy found that 94% of people had consulted a neurologist at some point during the course of their diagnosis and 62% had a neurologist as their primary physician. Additionally, the primary form of treatment is seizure medication, with 93% of people currently taking a medication and 55% having no seizures in the past 90 days. Current insurance coverage information on people with epilepsy is more limited, but a 2011 study of Arizona ER patients found that patients with epilepsy were more likely to have public insurance. Although these patterns in care exist, these studies also report many problems like long appointment wait times, lack of access in rural or underserved areas, and lack of communication between providers, among others.
Past surveys have quantified the healthcare disparities existing among people with epilepsy. The 2010 and 2013 National Health Interview Survey compared adults reporting no history of epilepsy to those with active epilepsy, finding that those with epilepsy experience significantly greater barriers to health. The survey calculates rate ratios to quantify these gaps in care, adjusting for sex, age and race/ethnicity, finding that those with epilepsy experience quantifiable, real disparities. The study found that those with epilepsy have more of an inability to afford medication, mental health, eye, and dental care, along with reported transportation barriers and inability to get to appointments. The study also found that people with active epilepsy were significantly less likely to be employed and more likely to visit services for a mental health care provider/experience serious psychological distress.
A lot of variation exists in the estimations of financial burdens due to epilepsy; despite this range of impact, which is mostly due to a lack of standardized study methods and multiple data sources, the disparity is known to exist. A 2009 study on the 1996-2004 Medical Expenditure Panel Surveys calculated that a person diagnosed with epilepsy spends $4523 more per year on medical expenses than someone without epilepsy (in 2004 currency). Looking specifically at those with focal onset seizures, another US study using claims data found that those battling focal seizures spend $7190 more than those without focal seizures. Enrollees with focal onset seizures also were found to have higher rates of mental health conditions, more migraines, more overall neurological disorders and significantly more comorbidities, adding to excess expenditures. Additionally, the study found that costs for seizure medicine and direct epilepsy care were $3290 per person on average.
More recently, the Epilepsy Foundation conducted a 2020 survey on access to epilepsy care, in which they polled on major struggles among people with epilepsy and found that many individuals experience roadblocks in seeking care. They found that 59% of polled responses reported challenges with health insurance. Of these people reporting insurance troubles, 42% reported paying too much, 29% reported that paperwork was the biggest struggle, and 24% reported being denied a necessary treatment, service or test. Moreover, 45% of survey participants reported challenges in seeing a neurologist or epileptologist, with 59% citing long appointment wait times. An astounding 70% cited anti-seizure medication challenges like side effects, costs, and formulary switches.
The National Institute of Health has an initiative to improve access to care for those with epilepsy, specifically those in populations with low socioeconomic status and in racial/ethnic minority populations. The committee states that in order to rectify these inequities, the reasons they occur, the weight of importance on overall health outcomes, and the magnitude of the issues in relation to larger societal care gaps need to be understood. The model, which aims to improve access to healthcare services for people with epilepsy, has the following priorities: strengthen epilepsy care by primary care providers and have clear clinical pathways for referrals and more specific care, promote a flexible and patient-centered care plan for epilepsy and comorbidities, reach rural and undeserved populations, provide smooth transitions of care and make health insurance coverage affordable and readily available. Each goal has a respective committee, which plans and puts into place initiatives to close the gaps in care. All involve educating patients and providers about epilepsy, promoting strong relationships and organizing/streamlining health care delivery.
Resources:
Centers for Disease Control and Prevention (2020). Epilepsy Data and Statistics. Centers for Disease Control and Prevention. Retrieved from: https://www.cdc.gov/epilepsy/data/index.html
Epilepsy Foundation Advocacy (2021). Affordable, Comprehensive, Health Coverage. Epilepsy Foundation of America. Retrieved from: https://www.epilepsy.com/about-us/advocacy/advocacy-priorities/access-care/affordable-comprehensive-health-coverage
Epilepsy Foundation Advocacy (2020). Survey Results for Access to Epilepsy Health Care. Epilepsy Foundation of America. Retrieved from: https://www.epilepsy.com/article/2020/8/survey-results-access-epilepsy-health-care
Institute of Medicine (US) Committee on the Public Health Dimensions of the Epilepsies; England MJ, Liverman CT, Schultz AM, et. al., editors. Epilepsy Across the Spectrum: Promoting Health and Understanding. Washington (DC): National Academies Press (US); 2012. 4, Heath Care: Quality, Access, and Value. Available from: https://www.ncbi.nlm.nih.gov/books/NBK100604/
Thurman, D.J., Kobau, R., Luo, Y.H., Helmers, S.L., and Zack, M.M. (2016). Health-care access among adults with epilepsy: The U.S. National Health Review Interview Survey, 2010 and 2013. Epilepsy Behav. 2016 February; 55: 184-188. Retrieved from: doi:10.1016/j.yebeh.2015.10.028
