Access to affordable, comprehensive, accessible, physician-directed and person-centered care is critical to the well-being of people with epilepsy. People living with epilepsy utilize a variety of health insurance options to obtain care and access treatment. During the COVID-19 health emergency, more people with epilepsy and their families were able to access care through telemedicine. Social determinants of health, including socioeconomic status, race, ethnicity, age, and gender, can strongly influence epilepsy treatment access, disparities, and outcomes.
Affordable Care Act
Affordable Care Act (ACA) Marketplaces provide individual and family insurance through private companies with subsidies to help people pay premiums. The law that created the Marketplaces also included many insurance reforms, such as protections that provide coverage for people with pre-existing conditions like epilepsy, an end to lifetime and annual dollar limits on insurance, and the ability for states to expand their Medicaid programs.
The ACA has helped bring insurance coverage to many more Americans with epilepsy. In 2010 and 2013, before the ACA was fully implemented, 17.7% of adults ages 18-64 with active epilepsy were uninsured. After ACA implementation, in 2015 and 2017, the percentage of uninsured adults living with active epilepsy dropped to 7.3% (National decline in the percentages of uninsured among adults aged 18-64 years with active epilepsy, 2010 and 2013 to 2015 and 2017-U.S. National Health Interview Survey, Kobau R., Sapkota S., Koh H.K., Zack M.M. (2019) Epilepsy and Behavior).
Insurance at the expense of the employer
Most people in the United States get coverage through their employers. This insurance is regulated at both the state and federal levels. The insurance reforms of the Affordable Care Act also apply to most employer-sponsored insurance.
Medicaid
Medicaid is a joint state and federal health insurance program that provides health care services to more than 70 million low-income Americans, including more than 40% of people living with epilepsy. Each state administers its own Medicaid program according to certain parameters set by the Centers for Medicare and Medicaid Services (CMS). Medicaid is the primary payer for long-term services and supports, including home and community-based services. The Affordable Care Act (ACA) allowed states to expand Medicaid eligibility to all individuals with incomes below 138 percent of the federal poverty line and receive significant federal funds to pay for these new beneficiaries. During the COVID-19 public health emergency, states were required to provide coverage to Medicaid beneficiaries. After the public health emergency ended in May 2023, all states began verifying Medicaid eligibility and excluding those who did not meet Medicaid eligibility requirements or who did not complete the renewal process. More than 20 million people have been excluded from Medicaid, and a quarter of them are still uninsured.
Medicare
Medicare provides health insurance to Americans age 65 and older, as well as younger people with disabilities. Approximately 1.1 million Medicare beneficiaries live with epilepsy. Medicare beneficiaries receive coverage for inpatient and outpatient care, and can waive prescription drug benefits provided by a separate prescription drug plan. Medicare is one of the only remaining forms of insurance in the U.S. that does not have a maximum spending limit.
Alternatively, Medicare beneficiaries can choose a private health plan that manages all of their benefits, known as Medicare Advantage, which may have a maximum spending limit but may include a more limited provider network.
Telemedicine
Telemedicine has long been a way to get health care, especially for underserved communities such as rural areas and areas with a shortage of physicians or specialists. During the COVID-19 public health emergency, federal and state agencies provided flexibility to expand access to telemedicine, which proved helpful for some people with epilepsy who, for example, cannot drive or live far from the nearest epilepsy center.
Health equity
More research is needed to fully understand disparities in epilepsy treatment, but social determinants of health such as socioeconomic status, race, ethnicity, age, gender, educational attainment, and geography can negatively impact access to epilepsy treatment. Racial and ethnic minorities account for more than 40% of people living with epilepsy, but they face various disparities in obtaining an appropriate diagnosis, receiving care, and mortality from epilepsy. About half of adults with active epilepsy have an annual household income of less than $25,000, and adults with epilepsy are the most likely to report being unable to afford needed prescription medications. Children and adolescents with seizures are more likely to live in poverty and suffer from food insecurity.