You have rights under federal and state law to help you buy and keep coverage, as well as protections when you use your coverage. But these rights are not comprehensive, and they may vary depending on where you live, what kind of coverage you have or seek, and other factors.

To find out about your rights, it helps to know who regulates your kind of health insurance. This is not always easy to find out. States regulate many health insurance plans, including many group plans sponsored by small employers and most individual coverage you buy on your own. If you have or are trying to buy coverage under these kinds of plans, it is best to call your state insurance commissioner.

The federal government regulates some coverage including most health plans offered by very large employers. In this case, you need to contact the Employee Benefits Security Administration of the United States Department of Labor to find out about your rights. Visit www.dol.gov/esa or call EBSA's Employee and Employer Hotline at 866.444.EBSA (3272). When in doubt, though, your state insurance commissioner is usually a good place to start.

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Buying Individual Coverage

Your rights to get and keep private coverage are greatest in group health plans that are usually provided through employers. You tend to have far fewer protections when buying an individual policy on your own. In the next section we discuss the protections and rights you can expect from group, individual, or public insurance programs.

In most states, buying individual coverage can be harder if you are a cancer survivor – especially if it has been less than 5 years since your treatment ended. Where not prohibited by law, individual insurers can turn you down, charge you more, or permanently exclude coverage for cancer – though not all insurers will do so. Also, unless state law requires otherwise, individual health plans can use a much broader definition of pre-existing conditions, in some cases barring coverage for any condition you ever had. You may also have trouble buying a policy that includes specific services you need, such as prescription drugs or mental healthcare.

The rights you have when buying individual health insurance depend on where you live. State laws regulating individual health insurance vary a lot. Consult your state insurance commissioner for more information. (See page 21 for a listing of state insurance departments.) Or, you could consult free consumer guides that are published by Georgetown University and available on the Internet at www.healthinsuranceinfo.net.

Some states have very comprehensive laws that require health insurance companies to sell you any individual policy they offer. This is called guaranteed issue. Some other states require insurers to hold open enrollment seasons. In these states insurers cannot turn you down during open enrollment, but you might be turned down at other times during the year. In about a dozen states, your right to buy individual coverage from an insurance company is protected only if you qualify as “federally eligible” or “HIPAA eligible.” (HIPAA stands for the Health Insurance Portability and Accountability Act.) This means that you must have had at least 18 months of prior continuous credible coverage, your most recent coverage was under a group health plan, a government plan, or a church plan, you used up any available or state COBRA continuation coverage, and you meet other requirements.

Some states prohibit insurers from charging you more because of your health. Some other states let insurers charge higher premiums to cancer survivors and others based on their current health status or health history, but only within limits. However, in most states there are no limits on how much you can be charged for individual health insurance. In these states, premiums can vary significantly due to health status.

Some states limit the use of pre-ex exclusion periods in individual policies. However, pre-ex rules for individual coverage usually are not as protective as the rules for group coverage. For example, in many states, individual health insurance policies can permanently exclude coverage for a pre-existing condition. This is called an elimination rider. Also, individual insurance policies often are not required to give you credit for prior coverage against any pre-ex they might impose.

Finally, in some states that do not offer you many protections when buying private coverage, you can buy coverage from a state high-risk pool, a program that sells health insurance to people who need to buy health coverage but can't because they are considered "medically uninsurable" by insurance companies. High-risk pools also vary a lot from state to state. Some offer very comprehensive coverage for relatively affordable rates. Other high-risk pools are more expensive, cover fewer benefits, and have waiting lists to enroll. A few are closed to new enrollees.

Buying Private Coverage

Employers are not required to offer health insurance benefits to their employees. However, if you are offered group health coverage, you have rights under federal and, for state regulated plans, state law.

Nondiscrimination

Your eligibility for coverage under a group health plan cannot be conditioned on your health status, which includes how healthy you are now or have been in the past. This means you cannot be refused health benefits under an employer’s health plan or charged a higher premium simply because you are a cancer survivor. You might be ineligible for other reasons unrelated to your health status, such as if you only work part time.

Special enrollment periods

You must be offered a special enrollment period of at least 30 days when you get married, divorced or widowed, have a baby or adopt a child, lose other health insurance (for example, coverage that another family member had through his or her employer), or your employer stops contributing to your premium. In addition, you get a special enrollment if you meet or exceed a lifetime limit of all benefits under the plan. If your employer provides family coverage, all of your dependents must be offered this special enrollment opportunity as well.

Coverage for pre-existing conditions

Sometimes group health plans will temporarily exclude coverage for a health condition you already have when you join. This is called a pre-existing condition exclusion period, or pre-ex, for short. If your group health plan does this, you will have insurance coverage, but it will not pay for any care related to your pre-existing condition during the exclusion period. Group health plans cannot impose a pre-ex longer than 12 months, or 18 months if you are a late enrollee. Also, there are limits on what can be subject to a pre-ex.

In group health plans, a pre-existing condition is one for which you actually received a diagnosis, treatment, or medical advice in the 6-month period – known as the look back period – prior to joining the group health plan. (In some state-regulated group plans, the maximum pre-ex or look back period may be shorter.) So, if your cancer treatment ended some time in the past and you have received no related care in the past 6 months, your group insurer cannot say that cancer is a pre-existing condition for you. In addition, group insurers cannot consider pregnancy or genetic information as a pre-existing condition. So if you have a family history of cancer or a positive genetic test indicating you are at risk for getting cancer, this alone cannot be the basis for a pre-ex.

Credit for prior coverage

When a group plan imposes a pre-ex, it has to give you credit for other health coverage you may have had in the past. Whenever you leave a health plan, you should be given a certificate of creditable coverage as proof of the coverage that you had. To be creditable, your prior coverage must have been continuous, which means it cannot have been interrupted by a lapse of 63 days in a row or longer. In some state regulated group plans, the maximum lapse of coverage may be longer than 63 days. Most kinds of health insurance are creditable toward a group health plan pre-ex, including other group plan coverage, individual coverage, state high-risk pool coverage, Medicare, Medicaid, and military healthcare (TRICARE).

So if you join a new group health plan with a 12-month pre-ex, but you have just left a job last week where you had health benefits for a year, your prior coverage will cancel out the pre-ex. Your new group health plan will cover your pre-existing condition immediately.

COBRA continuation coverage

A federal law, the Consolidated Omnibus Budget Reconciliation Act (known as COBRA) lets you and your family stay covered under your group health plan even if you no longer are connected to that employer due to certain circumstances. All employers with 20 or more employees must offer this COBRA continuation coverage option. In addition, some states require similar continuation coverage for people when they leave smaller employers. Employees and beneficiaries are given 60 days from the date they lose coverage to make a decision about continued coverage through COBRA. Continued coverage must be offered regardless of any health condition, including cancer, and must extend to surviving, divorced, or separated spouses and to dependent children. If you quit, retire, or lose your job, you and your covered dependents can remain in your employer group health plan for up to 18 months.

However, if your spouse or children lose access to your group benefits because of your death or divorce or because you drop coverage when you become eligible for Medicare, they can remain in the plan for up to 36 months. In addition, your children can stay on your group plan for up to 36 months after they reach the age when they no longer qualify as your dependent. When you take COBRA coverage, you have to pay the entire premium (including the portion the employer used to pay on your behalf). This will probably seem like a big rate increase for you, but it may turn out to be less expensive than other coverage you can buy elsewhere as a cancer survivor.

The Employee Benefits Security Administration (EBSA) of the United States Department of Labor enforces COBRA for most employers in the private sector. The Centers for Medicare and Medicaid Services of the United States Department of Health and Human Services regulates COBRA compliance by state and local government employers. Should you encounter a problem, the first step to resolving a COBRA complaint is to try to work it out with the employer. If that fails, you should contact the appropriate federal agency.

Learn more about your insurance rights:

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