Health Coverage

Prioritizing Your Health

Access to medical care and appropriate treatments is critical to the health, family, and employment for individuals living with epilepsy and seizures. A key priority for the Epilepsy Foundation of America and Epilepsy Foundation New England has been that all pre-existing conditions and chronic conditions must be covered without limitation.

Recent changes to federal law through health care reform, the Affordable Care Act, expand options for affordable and meaningful coverage for people with epilepsy. For people with epilepsy and other chronic health conditions or disabilities, it is important to understand your health insurance coverage, benefit structure, and your rights to appeal decisions in order to maximize your health benefits and best manage your health care expenses.

Types of Coverage

There are many different types of insurance coverage available including group benefit plans, HMOs, Medicare, Medicaid and individual insurance policies. For many individuals and families, the most effective, least restrictive and least expensive way to obtain health insurance is through your employer.

If you are not employed or if your employer does not offer insurance, it can be very challenging to find insurance that is affordable and offers coverage of needed benefits. This is changing due to federal health reform, there are new options called PCIPs, pre-existing condition insurance plans that can expand access to insurance for people with epilepsy (see details below).

Government Health Insurance Programs – Medicare & Medicaid

Medicare and Medicaid have played a critical role in the lives and the futures of roughly 20 million children, adults and seniors with disabilities. Medicare is a health insurance program for people aged 65 and older, and for people under age 65 who are eligible to receive SSDI (Social Security Disability Insurance) or Railroad Disability benefits for two consecutive years. Medicaid is a benefit program that provides health care services to people with low incomes.


Medicare covers hospital-related expenses and services such as physician care and prescription drugs for additional premiums. For those who have limited income and assets, the state may pay your premium.

For people who are enrolled in Medicare's prescription drug coverage program (known as Part D), the Affordable Care Act will gradually eliminate the coverage gap (or “donut hole”) that occurs between the initial coverage limit for prescription drugs ($2,830) and the point when catastrophic coverage kicks in ($4,550). Since 2011, the Act provides a 50 percent discount on brand-name drugs in the “donut hole,” and will completely close the gap for all prescription drugs by 2020.

Annual open enrollment for Medicare Part D prescription-drug coverage runs from November 15 through December 15. Plans can vary, so take time to compare plans and their costs for your prescription drugs to get the best coverage for your needs. For more information:


Medicaid is a joint federal-state program that pays for services on behalf of certain groups of low-income persons. Medicaid is available only to certain low-income individuals and families who fit into an eligibility group that is recognized by federal and state law. Medicaid does not pay money to you; instead, it sends payments directly to your health care providers. Depending on your state's rules, you may also be asked to pay a small part of the cost (co-payment) for some medical services.

One of its most important benefits is prescription drug coverage. As of January 2006, Medicaid's elderly and disabled beneficiaries began receiving their drug coverage under Medicare. For many, Medicaid continues to be an important source of funding in the nation's pharmaceutical markets, and Medicaid drug coverage an important source of prescription drug coverage for many low-income and disabled Medicaid beneficiaries.

Depending on the state, Medicaid is either free or requires small co-pay for services. It is available for many recipients of SSI (Supplemental Security Income) and SSDI, and others who may not qualify for SSI but whose medical expenses exceed a certain level (as established by each state).

In some states, SSI recipients automatically qualify for Medicaid. Each state also offers a children's health insurance program that provides health insurance to children (SCHIP). Some states SCHIP is available to pregnant women depending upon the income level of the household.

To learn more about the children's health insurance program in your state, call 1-877-543-7669, or visit the Social Security Administration's Kids Web page.

More information on Medicaid

Private or Individual Insurance Market

For most people health insurance that is meaningful provides access to their epileptologist, neurologist, or physician and to their prescribed treatments at an affordable cost. No matter which health care plan you have, be sure to keep up with any changes that may occur and be your own best advocate.

Educate yourself about your policy; know what it covers and what it doesn't, and how to appeal any decision denying coverage or payment. When making decisions about coverage, review your options as one plan may not be appropriate or offer the best and most affordable coverage for your health needs.

If you are changing policies or evaluating your employer (or a potential employer's) health plan, make a list of all the things you rely on for seizure control and other health needs. Compare the costs in the different policies you're considering – including co-pays, premiums and deductibles. Pay close attention to the insurer's policy on prescription drug coverage and physician networks.

If you do not have employer-sponsored insurance, then you as an individual or family may look to the private insurance marketplace for access to health insurance. For people living with epilepsy who need to find insurance coverage on their own, pre existing condition clauses have been huge obstacle.

However, the new federal health reform law has done a lot to improve the market. Under the Affordable Care Act in 2014, most health insurers will no longer carve out needed benefits, charge higher premiums, put lifetime limits on coverage of key benefits, or deny coverage due to a person's pre-existing condition.

Some companies will approve policies but will exclude coverage for epilepsy and related expenses, or they may require the individual to pay a higher deductible – it is important to understand what your policy is offering and the costs involved. In addition, there are better options than a restricted or costly policy – PCIP plans have begun to offer coverage under the new health reform law.

PCIP - the Pre-Existing Condition Insurance Plan

PCIP coverage is in place to help provide options for adults with pre-existing conditions during the transition time until health reform provisions are implemented in 2014. Especially for individuals who lose health insurance due to the loss of employment, the PCIP is an important program that will provide access to health insurance. PCIP will be available in every state—but the program may vary from state to state.

This new program will cover health care needs including physician and specialist care, hospitalization, and prescription drugs. Benefits that are available will provide treatment for pre-existing conditions. PCIP eligibility is not based on income and rates set for the program are not based on your health status or pre-existing condition.

Eligibility is for adults with pre-existing conditions who have been uninsured for six months, have a pre-existing health condition or have been denied coverage due to their health status, and area U.S. citizen (legal resident).

Private Insurance – Coverage for Children & Dependents

For children in the private insurance market, changes have taken place to make the insurance more affordable and accessible for children with pre-existing health conditions like epilepsy. Employer health plans and new individual plans that begin or renew after September 23, 2010, will not be allowed to deny or exclude coverage for children (under age 19) based on health conditions.

Families of young adults and children who have epilepsy will find new opportunities to provide meaningful coverage or maintain their current coverage because of the new law. For children and young adults there will be the ability to stay on a parent's policy longer.

As many parents know, it has been very difficult for young adults who age out of their parent's policy to find coverage that meets their needs and does not exclude coverage for their epilepsy care. This happens for most children and young adults when they graduate from high school or college, when they turn a certain age, or when they no longer live at home and begin working.

The new reforms will help adult children, who would otherwise likely lose all coverage options, stay on their current policy. These changes are for plans or group policies that offer dependent coverage and take effect after September 23, 2010.

For new plans and policies beginning after this date, insurers who offer dependent coverage must offer coverage to enrollees' adult children until age 26. For current policies, it may not change until the next time your plan or group policy (such as an employer policy) is renewed or begins a new contract.

Private Insurance & Medication Switching

The Epilepsy Foundation New England and the Epilepsy Foundation of America strongly believe that patient and physician consent should be obtained before an individual with epilepsy experiences a substitution in their epilepsy medication.

The Foundation also supports insurers providing equitable access to epilepsy medications where a patient and/or their physician recommend against medication substitution. We support cost sharing and prescription drug copayments that do not penalize an individual who needs to maintain consistency with their epilepsy treatments.

If you have private insurance coverage that offers a prescription drug benefit, there are a variety of ways to stay on your exact medication and it is important to understand what your plan requires.

In addition, coverage does not necessarily mean that there will be no increase in cost; if you are able to avoid a medication substitution you should ask your insurer what your cost is (your total copayment to stay on the brand name drug).

State Laws That Help & Regulating the Insurance Industry

Many insurance products are regulated by elected or appointed state government officials called Insurance Commissioners. The state insurance commissioner and their department can give you more information about your state's health insurance rights and protections, your options for health coverage, buying insurance and other resources (including filing consumer complaints).

If you are denied insurance coverage due to your epilepsy, you may want to contact your state office of insurance to determine whether the insurer's actions were legal under your state laws.

For your state's insurance commission information, you can contact Epilepsy Foundation New England Resource and Support Center at 617-506-6041 ext 109 or contact the Epilepsy Foundation of America Information and Referral Department at (800) 332-1000 or find your state's office.

Federal Laws That Help & Regulating the Insurance Industry


Many people have heard of "COBRA" in relation to health insurance, but may not know what it stands for or what it can offer. The Comprehensive Omnibus Benefits Reform Act of 1986 (COBRA) is a federal statute that can help people retain coverage when they have left a group health plan.

Individuals who are no longer eligible for group health coverage due to a qualifying event (such as the loss of a job) can purchase COBRA coverage for up to 18 months (this may be extended in limited circumstances).

COBRA and other protections can help to:

  • Maintain coverage while finding or starting a new job, and
  • Limit pre-existing condition periods that may apply to a new insurance plan.

ADA Remedy

Refusing to provide coverage for certain conditions may also give rise to a claim under the Americans with Disabilities Act (ADA). Unfortunately, on the federal level, courts disagree on whether the Americans with Disabilities Act (ADA) provides protection in regards to health insurance policies that provide different amounts of coverage for different disabilities.

Under Title I & Title II, employers and public entities (which includes states and their departments and agencies) that provide health insurance do not have to provide the same coverage for all conditions, so long as they offer the same policy to all employees.

Under Title III, insurance companies are only required to provide equal access to policies, not equal coverage for all disabilities and conditions. Under all Titles, differential treatment is permitted so long as it is based on sound actuarial data.

For additional information regarding ADA claims based on discriminatory insurance practices, contact an attorney or disability law center in your area.

Rate Review

Starting September 2011, under the ACA large rate increases proposed by insurers in every state will be reviewed by independent experts to guarantee the increase is reasonable and warranted.

This process, called "rate review," will require insurance companies to justify increases of 10 percent or more in the first year, and insurers will be required to publish those explanations on their website. The federal government will also provide support through grants to states to help them create or strengthen their rate review processes.

Additional Resources:

You can read more about the health reform law at:

Read about PCIP coverage:

State Health Insurance Program (SHIP)

Provides free assistance to Medicare beneficiaries:

Medicare Rights Center:

A national nonprofit that works to ensure access to affordable health care for older adults and people with disabilities.

Online Subscription for “Medical Watch”:

Answers to Medicare Questions from Medicare Interactive

Consumer Helpline: (800) 432-5378

The Catalyst Center

National Center for Health Insurance and Financing for Children and Youth with Special Health Care Needs (CYSHCN).

The goals of the Catalyst Center are to: promote universal, continuous, and affordable coverage for all CYSHCN; close benefit and financing gaps; promote payment for additional services; and build sustainable capacity to promote financing of care. Learn More: