Insurance Problems?

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Visit Conquering Insurance Issues and Problems

Patients with cancer must often wage two battles: They fight to regain their health, and they fight to get what they deserve from their insurance plans. Here's how to get the most out of your coverage:


Pull out your employee health-insurance handbook and read your health plan. It's not an exciting read, but reviewing the fine print now can reduce the likelihood of misunderstandings later on. (For example, some health plans require preauthorization for an MRI or CT scan.) Whether you have traditional (“fee for service”) health insurance or a managed care plan (such as a health-maintenance organization (HMO) or preferred-provider organization (PPO)), learn what you need to do to get the most out of your coverage.

Among the things you'll need to know:

  • How do I go about getting a second opinion?
  • If I have a managed-care plan and see an out-of-network doctor, will the appointment be covered?
  • Must treatments be preauthorized, and if so, when?
  • What is exactly covered (e.g. doctor appointments, hospitalizations, chemotherapy treatments) and to what extent?
  • Must I meet a deductible before my insurance company starts paying for appointments?
  • Am I allowed to choose my own specialists or switch to a different doctor, if I'm dissatisfied with the care I'm receiving?

It's also helpful to meet with a human resources or employee benefits representative to learn about any programs that your company may have in place that can help with your medical bills. Ask if your company offers:

Health Savings Accounts

These medical savings accounts allow you to pay for qualified medical expenses by contributing pre-tax dollars from your paycheck. Some employers set up HSAs for their workers and may even help fund them. Funds roll over from one year to the next.

Flexible Spending Accounts

These special accounts also allow you to pay for qualified medical expenses by contributing pre-tax dollars from your paycheck. FSAs can only be set up by employers, and there are limits to the dollar amount that an employee can contribute. (Employers may or may not contribute funds.) It's important to accurately estimate how much you'll need to spend on qualifying medical expenses each calendar year, because the funds don't roll over indefinitely; after a short grace period at the end of the year, unused money in your account is forfeited.

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 conversation with your doctor, your employer, your human resource person, make notes," suggests Beth Darnley, special projects director of the Patient Advocate Foundation (800-532-5274,, a nonprofit group based in Newport News, Virginia. 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. For instance, a university researcher diagnosed with breast cancer received a hospital bill that stated she owed $13,000. Her PPO plan covered hospitalization, so she called the insurance company to question why she was sent a bill. Sure enough, someone had miscoded the charge, and the $13,000 bill was quickly cleared up. From this experience, she learned: "Begin these conversations by taking a deep breath. Don't assume what comes in the mail is correct."
  • Brush up on your negotiating and assertiveness skills, if necessary. The National Coalition for Cancer Survivorship 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. Depending on how your insurance is administered, it may be possible to appeal and get a denial overturned just by working with your company's benefits manager or a representative in 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 ( 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 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.) In addition, you should know about the following developments:

  • In 2000, President Clinton signed an executive order requiring Medicare to cover the routine health care costs of patients eligible for clinical trials.
  • Soon, access may be easier for others as well. In March, 2001, four U.S. representatives introduced the Access to Cancer Clinical Trials Act, which requires all private health insurance plans to provide coverage for the routine costs of cancer patients who qualify to participate in a clinical trial. The proposed act, H.R. 967, has been referred to the House Ways and Means Subcommittee on Health. Several other proposals include similar provisions for coverage of clinical trials, and advocates hope one of these bills will eventually become law.

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 several laws, including the health insurance reform of 2009.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA)

  • guarantees access to health insurance in certain circumstances and the ability to bring it along to another job.
  • prohibits discrimination based on health status in certain circumstances.
  • protects medical privacy, including a cancer diagnosis and treatment, by limiting certain people from disclosing information.
  • sets limits on who can have access to a person's health information in all forms.
  • prevents anyone from receiving a person's health information without his or her consent and ensures that what is shared are only the relevant details.

HIPAA limits a new employer's ability to deny someone health insurance coverage for a pre-existing medical condition, but there are circumstances when coverage for such a condition can be excluded for up to 12 months. To learn more about this and other aspects of HIPAA, read the U.S. Department of Labor's “FAQs About Portability Of Health Coverage And HIPAA” page at Or visit the U.S. Department of Health & Human Services' Office for Civil Rights “Health Information Privacy” page at

The Consolidated Omnibus Budget Reconciliation Act (COBRA)

  • gives eligible employees and their family members the right to continue receiving their health-insurance benefits for 18 months after leaving the company.
  • allows patients to continue seeing their own doctors for continuous treatment, since they keep the same health plan.

Employees at companies with 20 or more workers are eligible to receive COBRA benefits if they sign up within 60 days of losing their health-care coverage. An eligible employee can elect COBRA when he or she experiences a qualifying event, such leaving his or her job. Former employees who take advantage of COBRA must pay the monthly health-insurance premium themselves. To read more about COBRA, visit the U.S. Department of Labor's “FAQs For Employees About COBRA Continuation Health Coverage” page at

The Patient Protection and Affordable Care Act of 2010

  • implements new regulations which will prevent all health insurers from denying coverage to people for any reason, including health status, and from charging higher premiums based on health status and gender.
  • requires most individuals to have health insurance beginning in 2014.
  • allows individuals who do not have access to affordable employer coverage to purchase coverage through a health Insurance Exchange.
  • small businesses will be able to purchase coverage through a separate Exchange.

You can find out much more about how the new provisions will affect both employers and employees at the Department of Labor’s site dedicated to the Affordable Care Actat

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

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 (, 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 ( 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 (, 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 ( 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.