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 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 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 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.

The Epilepsy Foundation advocates to ensure that all people with the epilepsies have access to quality health care that is affordable, accessible, physician-directed, person-centered, inclusive, and equitable.

We are dedicated to implementing, strengthening, and enforcing the protections created by the ACA, especially as they relate to health plans offered in the Marketplace and Medicaid expansion. We strongly support Medicare and Medicaid and oppose efforts to cut or limit the programs, including through block grants or the implementation of work requirements in Medicaid. For the majority of people with the epilepsies, epilepsy medications are the most common and cost-effective treatment for controlling or reducing seizures, so the Foundation also advocates for timely, affordable access to prescription medications within all forms of insurance as well as access to other treatments like surgery or neuromodulation devices. The Foundation has also endorsed the Health Equity and Accountability Act, a comprehensive bill that would create a more equitable health system.

The Foundation supports people being able to choose to receive care via telehealth even after the official end of the public health emergency. To facilitate this, person-centered policies should be in place including all plans covering telehealth services, in-person services still being available, and telehealth technologies being accessible. Additionally, since some anti-seizure medications are on the controlled substances list, the Foundation is asking the Drug Enforcement Administration (DEA) to continue to allow the prescribing of controlled substances via telehealth.


The Affordable Care Act (ACA) has been upheld three times, most recently in June 2021, by the U.S. Supreme Court. Many patient organizations, including the Epilepsy Foundation, filed amicus briefs with the Court in support of the ACA and its protections for people with pre-existing conditions. These important protections have helped to grow the ACA market, with more than 20 million people signing up for a plan in 2024. These plans have also become more affordable thanks to the Advanced Premium Tax Credits (APTCs), which are subsidies that reduce ACA premiums based on income. The Foundation continues to ask Congress to permanently reauthorize the APTCs. 

Section 1557 of the Affordable Care Act prohibits discrimination in health care settings on the basis of race, color, national origin, age, disability, or sex. In April 2024, the U.S. Department of Health and Human Services (HHS) issued a final regulation that was strongly supported by the Foundation that strengthened and enhanced these protections. 


There are currently 41 states, including Washington, D.C., that have adopted Medicaid expansion to bridge the coverage gap. The Foundation continues to advocate for additional states to expand Medicaid and has opposed Medicaid waiver proposals in many states that would restrict access to coverage. The Foundation supports investments in Medicaid home and community-based services that help people with disabilities, including epilepsy, to live independently. The Foundation is also asking the Centers for Medicare and Medicaid Services (CMS) to better regulate and oversee the state Medicaid unwinding process to ensure that people with epilepsy do not lose their Medicaid coverage or are able to easily switch to another form of insurance. 


Much of the Foundation’s recent advocacy has been around protecting and improving access to medications within Medicare. For example, the Foundation was a leader in maintaining Medicare’s Six Protected Classes, as well as ensuring that Medicare beneficiaries could have up to a 90-day supply of medications through the COVID-19 pandemic. The Foundation also advocated for an out-of-pocket cap for Medicare prescription drug costs, and this cap will take effect in 2025. 


Through the COVID-19 public health emergency, federal and state agencies and private insurance provided flexibilities to increase access to care via telehealth, particularly in the Medicare program.  The Foundation supports efforts to extend telehealth flexibilities and ensure it is an option to receive care.

Health Equity

The Health Equity and Accountability Act was introduced in both chambers during the 116th Congress. In addition to the Foundation, it has support from nearly 200 organizations, the Congressional Asian Pacific American Caucus, the Congressional Black Caucus, and the Congressional Hispanic Caucus. The Foundation also supports the Improving the Social Determinants of Health Act, which would establish a program at the Centers for Disease Control and Prevention (CDC) to improve health outcomes and reduce health inequities.

Authored By:

Epilepsy Foundation Advocacy

on Tuesday, December 01, 2020

Reviewed By:

Epilepsy Foundation Advocacy

on Friday, May 31, 2024


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