Health insurance for cancer patients can be a battle. People with cancer must often wage two battles: They fight to regain their health and to get what they deserve from their insurance plan. Here, advice from cancer organizations, advocacy groups and survivors about how to get the most out of your coverage so you'll be assured the best possible medical care.

Know Your Insurance Plan

The moments and days after you hear a cancer diagnosis are understandably filled with anxiety and uncertainty. As soon as you feel able, however, it's a good idea to sit down and read your health plan. It's not exciting reading, but looking through the health plan now can reduce the likelihood of misunderstandings and glitches later on.

Whether you have traditional ("fee-for-service") health insurance or a managed care plan, such as a health maintenance organization (HMO) or a preferred provider organization (PPO), be sure you know what you need to do to get the most out of your coverage.

Among the questions you need to know how to answer:

• How do I go about getting a second opinion?
• May I go out of the network or plan [for managed care subscribers] to obtain care, and is it covered?
• Must treatment be pre-authorized and if so, when?
• What exactly is covered (e.g., doctor's office visits, hospitalizations, chemotherapy treatments), and to what extent?
• May I choose my own specialists?
• If I change my mind and want to go to another doctor, is it possible to switch?
• Is there a specific representative I can always call on for help, or is there a toll-free number, or both?

Be Your Own Manager

If record-keeping is not your forte, now is the time to learn.

Among the ways you can become better at maintaining health care-related paperwork:

• Keep an informational journal. After every interaction with your health care provider, describe the conversation topic, the date, the time. Then, as the conversations accumulate, it will be easier to keep them straight. Having all these details might also swing some coverage decisions in your favor.
• Don't discard a shred of paper received from your insurance provider. One woman with cancer had thrown away an insurer's denial of treatment letter, then needed it when she decided to appeal. She had to request a duplicate letter, slowing down her appeals process.
• Get everything your insurance plan representative promises you or explains to you about coverage in writing.
• Download our insurance template, which can make it easier to organize information.

Lobby for Yourself

While you will likely have help from family, friends, co-workers, support group members, your doctors and your insurance representative, you will always be your own best advocate.

To be sure you're doing the best job possible, follow these tips:

• When you find out the name of the insurance representative to call for questions, telephone him or her and introduce yourself. Ask for their title and work hours and the best time of day to call. Be friendly, pleasant and appreciative, and you will likely have another person in your corner.
• Before you call your representative for the first time, vow to maintain a friendly, professional attitude, difficult as it might be. It's not always easy to lay aside that "insurers are the enemy" mindset, but it usually helps to do so.
• Stay positive. You might be surprised to find out the problem can be resolved with one brief conversation.
• Brush up on your negotiating and assertiveness skills, if necessary. The National Coalition for Cancer Survivorship (http://www.canceradvocacy.org) distributes the Cancer Survival Toolbox, a free audio tape program aimed at helping patients communicate with their insurer, make decisions about treatment, negotiate and fight for their rights.

Troubleshoot for Yourself

What problem areas in insurance coverage can you expect?

Here are the most common complaints heard from patients, and what advocacy groups recommend doing about them:

• Complaint: Denial of a treatment, a drug or a second opinion.

  Action: You can always appeal -- and then appeal again if you are denied again. Enlisting your doctor's help can speed the process. (See "When Your Insurer Says No, Take Action," below.)

• Complaint: Continuity of care problems. The oncologist who has been your source of both great treatment and emotional support leaves the insurance plan. Or your radiation provider has left the plan, but you have several treatments yet to finish.

  Action: Lobby your insurance agency to allow you to continue your care with the same physician. (See "When Your Insurer Says No, Take Action," below.)

When Your Insurer Says No, Take Action

Despite your best efforts and a positive attitude, your insurer may still turn down a request for a specific treatment, a favorite doctor or other care. Don't take no for an answer if you feel strongly about your request -- at least not before exhausting all avenues of appeal.

• First, try to negotiate yourself. Call the insurance plan representative or the managed care patient representative and explain your request and your reason for making it.
• Call in the troops. It may be possible to appeal and get a denial overturned by working with Human Resources.
• Make a formal appeal. You can get substantial help doing this. The Patient Advocate Foundation, for instance, outlines the steps and includes sample letters in its booklet, "Your Guide To the Appeal Process," which can be downloaded from its Web site (http://www.patientadvocate.org) or requested by mail by writing the headquarters at 753 Thimble Shoals Blvd., Suite B, Newport News, VA 23606.

  Before writing the appeal letter, the guide suggests, be sure you understand your diagnosis and your coverage; get a copy of the denial letter and understand the basis on which the treatment or other care has been denied. According to provisions in the Federal Employee Retirement and Income Security Act (ERISA), a specific reason for the denial should be stated in the letter. If you don't understand specifics in the letter, call the plan and ask for a contact person; have the representative explain exactly why the care has been denied.

• Call in more troops. In addition to your own appeal letter, you might also ask your physician to write a letter explaining why the treatment is crucial. To add even more weight to your case, consider adding studies from medical journals (your doctor may have these on hand) proving that the treatment or other care that is being denied is, in fact, effective.
• Follow up promptly and properly. When you file the appeal, make sure you know the length of time it will take to get a response. (This information may be included in your insurance plan, or you may have to ask.) If you get a telephone call telling you the denial has been overturned, get it in writing before celebrating your victory.. If you get a second denial, you need to ask for that in writing too. You may be able to appeal it again, sometimes to an external review board of experts not involved with the insurance plan.

Getting Insurance for Clinical Trials

You might decide that a clinical trial, offering a new treatment or drug, is the best approach for you. But your insurance plan might differ, at least when it comes to your coverage. Currently, some insurance plans won't pay for your radiation or chemotherapy if you are also in a clinical trial, says Rachel Tyree, a spokeswoman for the American Cancer Society's government relations office. Some will pay for one phase of a trial but not the next. (Listings of clinical trials by specific cancer and geographic location are posted at http://www.clinicaltrials.gov, a site developed by the National Institutes of Health.)

If your insurance company isn't doing all you think it should for you when you want to participate in a clinical trial, you can follow the same avenues of appeal as you do when other requests for care are declined. (See "When Your Insurer Says No, Take Action," above.)

Protecting Your Coverage

Once treatment is complete and you're on the road to recovery, you might start to worry about the effect a cancer diagnosis will have on your health coverage in the future.

In recent years, access to health insurance for people who have been treated for cancer and other serious conditions has improved, thanks to the Kassebaum-Kennedy Act, also known as the Health Insurance Portability and Accountability Act of 1996 (HIPAA).

What does HIPAA do?

• It was created to make it easier to move from one job to another without losing group health coverage. Under HIPAA, for instance, group health plans can't deny an application for coverage solely due to health status.
• HIPAA also limits the exclusions for pre-existing conditions such as cancer. In general, it provides more protection for those in group health plans, but it does provide some protection for those in individual plans.

To get answers to specific questions about pre-existing conditions and other coverage concerns, go to the Centers for Medicare and Medicaid Services website.

Because state laws governing insurance differ greatly, check in with your state department of insurance or other departments that regulate managed care or insurance. You can link to your state site via the National Association of Insurance Commissioners site at http://www.naic.org.

Other Insurance Resources

There's yet more help, and it's free, thanks to the growing number of advocacy organizations, some dealing with cancer only (or even a specific cancer) and others devoted to health care coverage needs in general.

When you've got a thorny insurance issue, here are some places to turn:

The Patient Advocate Foundation (http://www.patientadovcate.org), established by breast cancer survivor Nancy Davenport-Ennis, fields telephone calls via its hotline (800-532-5274) and assigns a case manager who sticks with you until the coverage problem is solved, whether that means one telephone call or dozens.

The National Coalition for Cancer Survivorship (http://www.cancercare.org) provides similar assistance through its toll-free number (877-622-7937) and also helps callers locate legal resources to solve insurance problems when the need arises.

The American Cancer Society (http://www.cancer.org), in the Cancer Resource Center section of its Web site, provides basic information on paying for chemotherapy, tips for keeping track of your insurance information, and "A Primer On Insurance Coverage for Women with Breast Cancer." Its information line (800-ACS-2345) is staffed by volunteers who will provide the same information by telephone.

The National Association of Insurance Commissioners (http://www.naic.org) provides links to specific state departments of insurance and other departments that regulate managed care. From these state offices, you can get information specific to your state. You can find out, for instance, if your state has external review boards for appeals.