Understanding Your Insurance

Some of the information included in this section is out of date. An update will be coming soon.

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.

In this section we discuss several aspects of health insurance that are important to cancer survivors. First, we describe the many different types of health insurance that are available and what you should look for when considering a health insurance policy. Then, we look at the rights you have under state and federal law that can help you buy and keep health insurance coverage.

We will also discuss things you need to keep in mind when using your coverage. Finally, we list places you can turn to for information on how to solve your health insurance problems.

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



Listen to the Cancer Survival Toolbox®

Health Insurance 


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Learn the basics of health insurance and what problems can arise. Hear how these problems can affect quality cancer care. 


Insurance Issues 


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Learn the facts of health insurance and about the laws that protect you as an American. 


Survivor Stories: Medical Expenses 


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Hear the steps that Cynthia, a cancer survivor, followed to succeed in finding ways to pay for her care. 


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Using Your Health Insurance

Read your policy

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. Going out of network might mean you pay more or that the plan will deny your claim. You might need to submit the claim within a certain number of days following the service in order for it to be paid. Reading your policy is important to understanding what coverage you have and how to use it.

Keep good records

Include copies of all bills and correspondence; Ask for names, addresses, and phone numbers of people you talk to, and note the dates of your conversations. It is a good idea to keep all original bills for follow-up purposes unless your insurance carrier is one of the few that insists you send the originals. In that case, you should keep very good copies for your records.

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 directly. Most insurance companies have a time limit for submitting claims. It could be one year from the date of service or by the end of the calendar year. Make sure you know what your policy defines as the time limit. If you have more than one policy, you must send the right bills to the right company in the right order. Remember that the patient’s insurance is always primary, the spouse’s is secondary.

If a claim is denied, appeal it

Send the claim back again and again if necessary. Ask your doctor to help make your case. Keep records of all your correspondence. And again, be aware of any time deadlines that might apply. Sometimes you can only appeal a denial within a certain number of days following the decision. In a growing number of states, if you are in a state-regulated plan and you appeal and your plan says no again, you can appeal to an outside panel of experts, also known as an external appeal.

These panels overturn plan denials about half of the time, so it is worth it to hang in there. Contact your state insurance commissioner for more information about your appeal rights. In addition, the Henry J. Kaiser Family Foundation and Consumers Union have developed "A Consumer's Guide to Handling Disputes with Your Employer or Private Health Plan." This guide will help you understand the type of coverage you have, what rules apply, and where to call for more information. To learn more about your appeal rights, visit www.kff.org/consumerguide.

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. Although Medicare and some state laws now mandate coverage for costs associated with cancer clinical trials, many other plans still deny coverage for care provided as part of a clinical trial. If this happens, appeal the denial. It may help if your doctor can call or write the medical director of your health plan. If the plan upholds the denial, you may be able to appeal to an outside panel of experts.

At the time this information was published, Congress was debating a law that would require health insurers to cover some of the cost of care in clinical trials. A few states have passed similar laws already. If your appeal fails, tell your insurer that you are hiring an attorney to settle the dispute in court. The courts have generally sided with cancer patients in these circumstances, and most insurers would rather cover the cost than go to court. If you do have to hire an attorney, however, make sure he or she is an expert in insurance law.

Know how you can protect the privacy of your medical information

Under federal privacy protections, information related to the treatment of your cancer is treated the same as any other health information. Federal law restricts how your health information can be used by your health-care provider, health plan, and other related organizations. However, these restrictions are limited and generally permit your health information to be used fairly freely for purposes related to treatment, payment, and many other transactions by health-care related organizations, including by insurers in the underwriting process.

In addition, if you are covered under an employer sponsored group plan, your employer may have access to your health information. However, federal law does prohibit your health plan from sharing your health information with your employer for employment related activities. To learn more about the rules protecting the privacy of your medical information under federal law contact the U.S. Department of Health and Human Services, Office of Civil Rights at 866.627.7748 or visit www.hhs.gov/ocr/hipaa/.

Additionally, some states have protections that go beyond those provided under federal law. To learn more about your protections under state law, contact your local consumer protection office. The Federal Citizen Information Center of the U.S. General Services Administration has a list of state, county, and city government consumer protection offices at www.consumeraction.gov. Finally, under federal law, you have the right to inspect, copy, and add information to your medical records to make it more correct or complete. These protections vary state to state. Georgetown University, Center of Medical Rights and Privacy has written consumer guides for most states that review these protections. To read or download the free guide for your state visit http://hpi.georgetown.edu/privacy/records.html.

The Medical Information Bureau (MIB) is a databank that has medical and non-medical information on many people who have ever applied for health, life, or disability insurance from any of the MIB’s 600 insurance company members. MIB receives information collected by insurers during the underwriting process. This includes medical conditions, test results, and other information that represents your past, present, and future health status. Although the MIB’s database seems like an invasion of privacy, it prevents fraud and abuse of the nation’s private insurance system.

If you have ever been denied life or disability insurance and you wonder why, your file at the MIB may be the answer. You have the right to make sure the information in your MIB file is correct. Call the bureau and ask for a copy of your records. MIB will provide consumers a copy of their record once annually without charge. The bureau will also tell you how to correct your records if you find an error. You can contact the MIB at 866.692.6901 or visit www.mib.com.


Learn more about dealing with health insurance:

Glossary of Insurance Terms »

Where to Turn for Help »


Survivor Stories

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