Advocacy: Affordable Comprehensive Health Coverage

Access to coverage and care that is affordable, comprehensive, accessible, physician-directed, and person-centered is crucial for the well-being of people with the epilepsies. People living with the epilepsies utilize a variety of different health insurance coverage options to receive care and access to treatment. During the COVID-19 public health emergency, more people with epilepsy and their families were able to access care through telehealth. Social determinants of health including socioeconomic status, race, ethnicity, age and gender can greatly impact access to epilepsy care, disparities and outcomes.

Affordable Care Act

The Affordable Care Act (ACA) Marketplaces provide individual and family insurance through private companies with subsidies to help people afford the premiums. The law that created the Marketplaces also included many insurance reforms,  such as protections to ensure coverage for people with pre-existing conditions like epilepsy, an end to lifetime and annual dollar limits on coverage, and the option for states to expand their Medicaid programs.

The ACA has helped get many more Americans with the epilepsies covered. In 2010 and 2013, prior to the ACA being fully implemented, 17.7% of adults aged 18-64 living with active epilepsy were uninsured. After the ACA went into effect, in 2015 and 2017, the rate of uninsured adults living with active epilepsy dropped to 7.3% (National declines 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).

Employer-Sponsored Insurance

Most people in the United States receive coverage through their employers. This coverage is regulated at both the state and federal level. The Affordable Care Act’s insurance reforms also applied to most forms of employer-sponsored insurance.

Medicaid

Medicaid is a joint state-federal health insurance program that provides health services for over 70 million low-income Americans – including over 40% of people living with the epilepsies. Each state administers its own Medicaid program according to certain parameters issued by the Centers for Medicare and Medicaid Services (CMS). Medicaid is the primary payer of 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 household 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 keep Medicaid beneficiaries enrolled in coverage. Since the end of the public health emergency in May 2023, all states have started reviewing the eligibility of people enrolled in Medicaid and disenrolling beneficiaries who do not meet the Medicaid eligibility requirements or who do not complete the renewal process. More than 20 million people have been disenrolled from Medicaid, and a quarter are still uninsured. 

Medicare

 Medicare provides health insurance for Americans age 65 and older, and to younger people with disabilities. Approximately 1.1 million Medicare beneficiaries are living with epilepsy. Medicare beneficiaries receive coverage for inpatient and outpatient care and may opt-in to prescription drug benefits provided by a stand-alone prescription drug plan. Medicare is one of the only remaining forms of coverage in the U.S. that does not have an out-of-pocket maximum. 

Alternatively, Medicare beneficiaries may choose a private health plan to administer all of their benefits, known as Medicare Advantage, which may have an out-of-pocket maximum but can include a more limited network of health care providers. 

Telehealth

Telehealth has long been an avenue to care particularly for underserved communities like rural areas and areas with physician or specialist shortages. During the COVID-19 public health emergency, federal and state agencies provided flexibility to increase access via telehealth which for some people with epilepsy who, for instance, cannot drive or live far from the closest epilepsy center, proved beneficial. 

Health Equity

More research is needed to fully understand disparities in epilepsy care, but social determinants of health like socioeconomic status, race, ethnicity, age, gender, education level, and geography can negatively impact access to epilepsy care. Racial and ethnic minorities represent more than 40% of people living with epilepsy but face various disparities in obtaining an appropriate diagnosis, receiving care, and epilepsy mortality. About half of adults with active epilepsy have annual family incomes of less than $25,000 and adults with epilepsy are more likely to report being unable to afford needed prescription medications. Children and adolescents with seizures are more likely to live in poverty and have food insecurity.