Advocacy: Affordable Comprehensive Health Coverage
Access to coverage and care that is affordable, comprehensive, accessible, physician-directed and person-centered is crucial for the wellbeing 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. Through the COVID-19 public health emergency, more people with epilepsy and their families have been 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 provided through private companies with subsidies to help people afford the premiums. The law that created the Marketplaces also included many insurance reforms, including protections to ensure coverage for people with pre-existing conditions like epilepsy and 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).
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 one third of people living with the epilepsies. Each state administers their 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 income below 138 percent of the federal poverty line and receive significant federal funds to pay for these new beneficiaries.
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. Alternatively, Medicare beneficiaries may choose a private health plan to administer all of their benefits, known as Medicare Advantage. Medicare is one of the only remaining forms of coverage in the U.S. that does not have an out-of-pocket maximum.
Telehealth has long been an avenue to care particularly for underserved communities like rural areas and areas with physician or specialist shortages. Through the COVID-19 public health emergency, federal and state agencies provided flexibilities to increase access via telehealth which for some people with epilepsy who, for instance, cannot drive or live far from the closest epilepsy center, has proven beneficial.
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. For instance, certain groups appear to have higher risk of epilepsy and hospital visits and/or lower rates of medication adherence and epilepsy surgery.
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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 implementation, strengthening and enforcement of the patient 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 insurance. 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 public health emergency ends. To facilitate this, patient-centered policies should be in place including all plans covering telehealth services, in-person services still being available, and telehealth technologies being accessible.
In June 2021, the U.S. Supreme Court ruled 7-2 in California v. Texas (previously Texas v. United States) that the plaintiffs had no legal standing, thereby dismissing the case, and preserving the entire Affordable Care Act law. This is the third time that the law has been challenged and upheld by the Supreme Court. Many patient organizations including the Foundation filed an amicus brief supporting continuance of the ACA and its protections for people with pre-existing conditions. In March of 2021, Congress increased the subsidies available to purchase coverage through the ACA. Check your eligibility at HealthCare.gov.
There are currently 39 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. The Foundation has also opposed Medicaid waiver proposals in many states that would restrict access to coverage. The Foundation strongly supports a $400 billion investment in and expanded access to Home and Community-Based Services (HCBS) in Medicaid (also known as “waiver services”) which is currently being considered by Congress.
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. In 2019, there were bipartisan proposals to create an out-of-pocket maximum for prescription drug coverage in Medicare which the Foundation has supported.
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. Flexibilities in government-sponsored programs like Medicare remain in place as long as the public health emergency continues. There is indication that private payers have started to restrict coverage of telehealth put in place earlier in the pandemic. Bills at the federal and state level have been introduced to extend telehealth as an option even after the public health emergency ends.
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, Congressional Black Caucus and Congressional Hispanic Caucus.
Engagement And Resources
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Epilepsy and Seizures 24/7 Helpline
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Tools & Forms
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