Serious illnesses such as oral, and head and neck cancers present many insurance concerns and challenges. Patients who have little or no insurance worry about how they will pay for treatment. Even the insured confront a maze of health insurance regulations that can vary greatly from state to state. Consequently, laws regulating an insurance company’s right to refuse to insure or pay specific claims vary from state to state.

For patients who have little or no health insurance, The National Coalition for Cancer Survivorship (NCCS) has developed the Cancer Survivors Toolbox

The following excerpts are from the NCCS booklet, What Cancer Survivors Need to Know About Health Insurance

More information by Karen Pollitz, M.P.P., of Georgetown University’s Institute for Health Care Research and Policy.

When cancer strikes, you may start thinking about health insurance in a new light. Chances are, you will use your health insurance more than ever before. You also may have more problems with insurance than ever before. Therefore, it is critical that you know and understand your rights and responsibilities under your health insurance plan.

Types of Health Insurance

It’s important for cancer survivors – like everyone else – to have adequate and dependable health insurance. There are many kinds of policies out there, though not all offer the same protection. It’s best to have comprehensive health coverage that will pay for all your basic health care needs such as hospital and doctor care, lab tests, medical equipment, and prescription drugs. When evaluating a policy to see if it meets your needs, in addition to looking at the premium, you need to consider:

  1. What services are covered?
  2. How much will you have to pay for covered services?
  3. From whom can you get care?

Know Your Rights and Their Limits

You have rights under federal and state laws to help you buy and keep coverage, as well as protection 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.

Who Regulates My Coverage

To find out about your rights, it helps to know who regulates your kind of health insurance. 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 call the United States Department of Labor to find out about your rights. When in doubt, though, your state insurance commissioner is usually a good place to start. 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.

Your Rights Under Group Coverage Offered by Employers

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

Nondiscrimination

Your eligibility for coverage under a group health plan cannot depend on how healthy you are now or have been in the past. This means you can’t be refused health benefits under an employer’s health plan simply because you are a cancer survivor.

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, or lose other health coverage (for example, the coverage that another family member had through his or her employer). 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 that 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 lookback period- prior to joining the group health plan. In addition, group insurers cannot consider pregnancy or genetic information as a pre-existing condition.

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 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. 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 health care (CHAMPUS).

COBRA Continuation Coverage

A federal law, known as COBRA, lets you and your family stay covered under your group health plan when you leave your job or in other circumstances. Depending on your situation, you and/or your dependents can remain in the group plan for up to 18 to 36 months. When you take COBRA coverage, you have to pay the entire premium (including the portion the employer used to pay on your behalf.) Your Rights Under Individual Health Coverage

In most states, buying individual coverage can be harder if you are a cancer survivor – especially if it’s been less than five years since your treatment ended. Where not prohibited by law, insurance companies can turn you down, charge you more, or permanently exclude coverage for cancer -though not all companies will do so. 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.

Public Coverage

Sometimes you can get health insurance from the government, instead of from a private employer or insurance company. Usually, you can only get public coverage if you qualify based on your age, your income, or your health status. Medicare and Medicaid are the biggest public programs and are available in every state. In a few states, there are other smaller programs that might be able to help you buy affordable health insurance.

Medicare

Medicare is health insurance provided by the federal government. You qualify for Medicare coverage if you are 65 or older and eligible for Social Security benefits, if you are disabled (regardless of age) and have collected Social Security benefits for 2 years, or if you are on kidney dialysis (regardless of age). Medicare will not refuse you coverage or charge you more because of where you live, your age or how sick you are. There are two parts of Medicare. Medicare Part A covers care you get in a hospital, skilled nursing facility, home health agency or facility. For most people who qualify for Medicare, there is no premium for Part A. You will, however, have to pay a deductible. In 2002, the deductible is $812 per benefit period. (A benefit period starts the day you go to the hospital or skilled nursing facility and ends when you have not received hospital or skilled nursing care for 60 days in a row.) Also, for longer stays in a hospital or nursing home, you will have to pay coinsurance. Note: Medicare Part A covers chemotherapy drugs and the costs of administering them when given in hospital outpatient departments, chemotherapy clinics, or doctors’ offices. Medicare Part B covers 80 percent of approved medical expenses, such as doctors’ charges, lab fees, durable medical equipment, ambulance services, and certain other supplies. In 2002, the monthly premium for Part B is $54, which is deducted directly from your Social Security check. In addition to your 20 percent coinsurance, there is also a $100 annual deductible for covered services. Medicare Part B does not cover outpatient prescription drugs, except for chemotherapy drugs that are injected intravenously or by intravenous pump, chemotherapy drugs you can take in pill form if they are also available as injectable or infusible drugs, and certain anti-nausea drugs. Because of Medicare’s high cost-sharing and what it does not cover (especially outpatient prescription drugs), you may want to supplement your Medicare coverage with a private supplemental insurance policy (also known as Medigap insurance). You can get more information about Medicare from the federal agency that runs this program- the Centers for Medicare & Medicaid Services (formerly known as the Health Care Financing Administration or HCFA). They can also provide more information about Medigap and Medicare managed care plans. To speak with a customer representative, call the Centers for Medicare & Medicaid Services at 1-800-MEDICARE or visit the agency’s Internet site at:

Medicaid and CHIP

Medicaid is a government program that provides health insurance for low-income people and families. Each state has its own Medicaid program with its own rules about whom and what it covers. However, because the federal government helps states fund their Medicaid programs, there are some national rules that apply everywhere. In most states, in addition to having very low income, you must be a child, a parent of dependent children, elderly, or disabled to qualify for Medicaid. Some states, though, do cover low-income adults who aren’t elderly, disabled or parents.

Children’s Health Insurance Program

In addition, all states now have a children’s health insurance program, sometimes called CHIP or S-CHIP. In many states, this is part of Medicaid. In others, it is a separate program.CHIP provides free or subsidized health insurance for low-income children, In many states, children can qualify if their family’s income is twice as high as the federal poverty level. (In 2001, the poverty level for a family of 3 was $14,630). In seven states, children with family incomes as high as 3 to 4 times the poverty level can be covered under Medicaid or CHIP. Contact your state Medicaid or social service department for more detailed information about your state’s CHIP program. For more information about Medicaid and CHIP in your state, check the government pages in your phone book, or contact The Centers for Medicare and Medicaid Services at:

Other Public Coverage

A few states offer other help for people who can’t afford health insurance. Some offer government-sponsored health insurance that you can buy at discounted premiums if you have a low income. A few states have programs that will help you buy coverage from a private insurance company. More than 20 states have high-risk pools where you might be able to buy coverage if a private insurer turns you down. In several of these states, a modest premium subsidy is available if you have a low income.

Using Your Health Coverage

When you need to make a claim on your health insurance, it is important to remember a few important things.

Read your policy, if possible, before you go for care in the first place. You may need to get permission (a referral) to see a specialist or to get a lab test. You might be restricted to a network of doctors or hospitals.

Keep good records, including copies of all bills and correspondence. Ask for names and phone numbers of people you speak to.

Submit your claims on time and in the right order. Your insurer will pay some bills directly to the appropriate parties if you request that on the claim form. Other bills you must pay yourself and then send copies of the bills to your insurer who then reimburses you.

If a claim is denied, appeal it. Send the claim back and back again if necessary. Ask your doctor to help make your case. Keep records of all your correspondence. And again, be aware of anytime deadlines that might apply.

Understand your coverage for experimental therapies and clinical trials. Sometimes an insurer will deny coverage for care they say is experimental. Insurers generally regard drugs, devices, and courses of treatment still under study as experimental. In other cases, some patients may want to enroll in a clinical trial. A cancer clinical trial is a study designed to determine the effects of a particular therapy or drug against cancer.

Know how you can protect the privacy of your medical information. Some states have laws protecting the privacy of your medical information. These laws vary a great deal. For more information about rules protecting the privacy of your medical information, see:

Where to Turn for Help and Information

It is always best to ask your insurance company or employer for help answering your questions or solving your insurance problems. If this does not work, though, there are other resources.

Your state insurance commissioner is always a good place to begin. They can help you understand state laws and programs and direct you to other sources of assistance. They also can help you figure out whether your plan is one that they regulate.

The United States Department of Labor regulates health plans offered by many large employers. For more information about the Department, try:

The Centers for Medicare & Medicaid Services (CMS) runs the Medicare program and works with states on Medicaid programs. CMS also helps regulate individual health insurance in a few states. The CMS web page can be found at:

Finally, many consumer groups such as the National Coalition for Cancer Survivorship may offer assistance:

U.S. News offers information on how to buy health insurance and publishes plan ratings for every state. If you’re over 65, see the guide to Medicare plans. Otherwise, start by looking up the Health Insurance Guide for your state.