Be the Boss Over Cancer

Insurance Problems?

Conquer them today with our convenient guide.

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:

Know Your Insurance Plan

Pull out the documents your health insurance company sent you 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?

If you have insurance through your employer, it may also be 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. The Affordable Care Act (ACA) imposed a $2,500 annual limit on FSA contributions, starting in 2012. 

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 healthcare-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, coworkers, 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 the human resources department.
  • 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, the ACA now requires each state to have an external appeals process. For more information about the appeals process in your sate contact the State Department of Insurance.  Contact information for each state can be found at

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. As of January 1, 2014, insurance companies are required to pay for the routine costs of cancer treatment, even if you are participating in a clinical trial.  For more information about this new rule, visit the Centers for Medicare and Medicaid Services (CMS). 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 healthcare costs of patients eligible for clinical trials.
  • Contact the Center for Consumer Information & Insurance Oversight. Or, if you are a participant or beneficiary in an employer-sponsored health plan, contact the Employee Benefits Security Administration, U.S. Department of Labor at, or call 866-444-3272.

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 Patient Protection and Affordable Care Act of 2010 (ACA).

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

First, understand that all the HIPAA safeguards apply equally to anyone with a serious health condition — whether it’s cancer, heart disease, liver disease or a host of other ailments. Any type of health condition falls into the “protected health information” category under HIPAA.


  • 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 gives you rights over your health information and sets rules and limitations on who can look over your health information.

Among the safeguards in place, mandated by the law, that you can feel comfortable your employer is following:

  • No disclosure of health information without your permission. Your human resources staff, for instance, can’t give anyone information until someone has obtained your OK.
  • The health information must be limited. Only details that are absolutely necessary for the other party — whether the other party is an insurance company, a doctor or other — to know can be transmitted.
  • Adoption of policies and procedures to safeguard health information. If your employer sponsors a self-funded plan, he must train the work force on the new policies, have a privacy complaint procedure in place and take “reasonable precautions” to be sure your information is secure. You should expect that only a limited number of employees have access to the health information files. If a variety of people seem to be handling your health information, you might ask exactly who has authorization to manage it. The employers agree to establish adequate “fire walls” to protect the privacy of your health information.

In addition, there are a number of measures you can take as an employee to be sure you’re getting full benefit of the law:

  • Less is more. When you are talking to your human resources representative or your boss, remember you aren’t talking to your health care team. They don’t need to know everything. Focus on answering questions as straightforwardly as possible; don’t ramble. If they want more information, let them ask.
  • Think through some of the procedures you are asked to do and whether your cancer treatment or diagnosis will affect your action. Suppose it is a workplace that does regular drug screening. You should ask your HR professional (as well as your physician) if cancer medications can affect the test results.
  • Expect to be asked permission to release information. If you go to HR and ask them to call your health plan about a claim that hasn’t been paid in a timely manner, you should expect to first sign a disclosure form granting permission for them to ask about the tardy payment, for instance.
  • If you aren’t certain if you are telling too much, role play first. You might rehearse with your physician or a friend familiar with the new law.
  • Keep yourself updated. The U.S. Department of Health and Human Services Office for Civil Rights ( has consumer information sheets on the site about HIPAA as well as a valuable section on frequently asked questions.

The Consolidated Omnibus Budget Reconciliation Act (COBRA)

  • Gives eligible employees the right to continue receiving their health insurance benefits for 18 months after leaving the company.
  • Provides eligible family members of employees the right to confine receiving their health insurance benefits for 36 months after losing coverage.
  • 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 healthcare coverage. An eligible employee can elect COBRA when he or she experiences a qualifying event, such leaving his or her job or reducing his or her hours. Former employees who take advantage of COBRA must pay the monthly health-insurance premium themselves. To read more about COBRA, visit

The Patient Protection and Affordable Care Act (ACA)

  • Implements new regulations which prevents 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 or pay a penalty
  • Allows individuals who do not have access to affordable employer coverage will be able to purchase coverage through a Health Insurance Marketplace.
  • Small businesses can purchase coverage for their employees through the Small Business Health Options Program (SHOP)

The Patient Protection and Affordable Care Act was signed into law by President Obama on March 23, 2010. Some of its provisions have already taken effect, additional changes will be added every year until 2020. You can get more timing details from the Kaiser Family Foundation’s timeline and an further explanation of the changes at You can also 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 Act at

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 Act, at

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 healthcare 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 website, 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.