For many cancer patients and survivors, health insurance plays a vital role in enabling them to manage their care. But knowing how to maximize your health insurance coverage — or how to find a plan that’s right for you if you don’t already have coverage — can be overwhelming. Here’s some information to help you navigate the health insurance maze.

Know Your Insurance Plan

It is important to read your health insurance policy and understand the coverage you have. It’s not an exciting read, but reviewing the fine print now can reduce the likelihood of misunderstandings later. For example, some health plans require pre-authorization 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.

To start, make sure you know the answers to the following questions:

• Do I need a referral from my primary care physician to see a specialist?
• Am I allowed to choose my own specialists and/or switch to a different doctor if I’m dissatisfied with the care I’m receiving?
• How do I go about getting a second opinion?
• If I see an out-of-network doctor, will the appointment be covered?
• Must treatments be pre-authorized, and if so, when?
• What, exactly, is covered (e.g., doctor appointments, hospitalizations, chemotherapy treatments) and to what extent?
• Do I have prescription coverage? If so, are both brand-name and generic medications covered? Which pharmacies are in my plan’s network?
• Must I meet a deductible before my plan covers appointments and treatments?

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

Be Your Own Manager

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

Some recommendations for how you can become better at maintaining healthcare-related paperwork include:

• Keep an informational journal. After every conversation with your doctor, your employer, your human resource person, make notes that describe the topic discussed, the date and time of the conversation, etc. to help keep them straight.
• Hold on to papers received from your insurance provider such as bills, explanations of benefits, etc. so they are readily available should you need to file an appeal.
• Ask your insurance plan representative to follow-up any phone conversations with an email summarizing what you discussed so you can have a written record for your information journal.
• Download our Health Insurance Interaction Log , which can make it easier to organize information.

Lobby for Yourself

Many survivors find that they are their own best advocate even if they have help from family, friends, coworkers, their healthcare team, etc. If you find this is true for you, here are some tips you may find helpful:

• 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.
• 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.”
• If you wish to brush up on your negotiating and assertiveness skills, 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. 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, reimbursement for a favorite doctor who’s out of network, 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.

All health insurance companies must now have an internal appeals process and all states must now have an external process for consumers to appeal health insurance companies’ decisions. For example, if your insurance company denies a claim on the basis that the procedure was experimental, you now have the right, in any state, to appeal that decision and show why it was not experimental. Those enrolled in a health plan must be provided with a notice about available internal and external appeals processes and be told of the availability of assistance to help complete the process. More information about this right can be found at www.healthcare.gov/marketplace-appeals/what-you-can-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.
• Ask for help. Depending on how your insurance is administered, it may also 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's webpage on Insurance Denials and Appeals is a great resource as are their publications which can be ordered through their website (www.patientadvocate.org).
• Keep track of your appeals process with Triage Cancer’s free Appeals Tracking Form

Before writing an appeal letter, be sure you understand your diagnosis and your coverage. Also, get a copy of the denial letter and make sure 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 contact your insurance company and ask to speak with a representative who can explain exactly why the expense was been denied.

• 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. 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 www.triagecancer.org/resources/stateresources
.

Healthcare Reform

The Patient Protection and Affordable Care Act (ACA) was signed into law on March 23, 2010. Many provisions of this law have already gone into effect. The law was designed to be phased in, with implementation completed in 2020. However, following the outcome of the 2016 presidential election, numerous potential changes to the ACA have been proposed and the future of the law remains unclear. Below, we’ve outlined the key points to know about the ACA, which were in place as of November 2017. We have also provided links to resources for staying up-to-date on any legistlative changes.

Personal Responsibility.As of March 31, 2014, everyone who can afford basic health insurance must obtain it; the alternative is to pay a fine to help offset the cost of care for Americans without insurance. There are a few exceptions to this rule, including cases in which affordable coverage is not available.

Help for those with pre-existing conditions. As of January 1, 2014, insurance companies can’t refuse to sell coverage or renew policies to persons with pre-existing conditions. Furthermore, women, as well as anyone with a pre-existing condition, can no longer be charged higher premiums for their health insurance.

Buying insurance from the marketplace. As of October 1, 2013, individuals can purchase health insurance from a state marketplace (otherwise known as an “exchange”). This is good news if you’re currently unemployed or if you are employed but your employer offers unaffordable or inadequate health insurance — or none at all.

State health insurance marketplaces are open to individuals and small businesses (i.e., those with fewer than 50 employees); they offer a choice of competitive health plans that must meet certain standards with regard to benefits and cost, in addition to being affordable. Insurance companies must apply to sell their plans through each marketplace and provide coverage for essential health benefits.

The ACA also limits how much marketplace plans may require consumers to pay out of pocket for medical expenses in addition to their premiums. These caps will help keep out-of-pocket costs down and stem the tide of bankruptcies caused by medical bills.

Marketplaces vary by state. States that run their own marketplace have websites you can visit directly to learn more about the options available. Or you can visit www.healthcare.gov to find information on health insurance options in any state.

Financial assistance. When you apply for a health insurance plan in the marketplace, you will be asked whether or not you are employed and whether your employer currently offers you coverage. You will also be asked to include some financial information. Based on all of this information, the marketplace can determine if you are eligible for any financial assistance.

If you can’t afford the coverage offered by your employer, you may be able to take the funds your employer would have contributed toward your company plan and use them to obtain a plan from the exchange.

People who buy plans in the marketplaces may also qualify for financial assistance to help them pay for their health insurance. This assistance is based on income level and family size. For example, individuals who have annual incomes of up to $45,960 may be eligible for a premium tax credit that would lower their monthly insurance premium. Similarly, individuals who have incomes of up to $28,725 may also be eligible for cost-sharing subsidies. These subsidies will reduce the cost of healthcare expenses an individual or family must pay when they receive medical care — for example, by lowering the copayment for visiting the doctor.

Restrictions and bans on coverage limits. For health plans beginning on or after September 23, 2010, insurance companies can not impose lifetime dollar limits on benefits that are deemed essential, such as hospital stays. A lifetime limit is defined as a cap on the total benefits your insurance plan will pay you, either for all benefits (e.g., a $1 million lifetime cap) or for certain benefits (e.g., a $200,000 cap on organ transplants).

Under the ACA, setting annual dollar limits on essential health benefits (such as for hospital stays) is banned altogether as of 2014.

Other Laws

There are a few other laws that help grant access to health insurance during an employment change.

The Health Insurance Portability and Accountability Act of 1996 (HIPAA) protects the privacy of your health information and may allow you to keep your health insurance when changing jobs. This law:

• Guarantees access to health insurance in certain circumstances, as well as the ability to bring it along to another job.
• Prohibits discrimination based on health status in certain circumstances.
• Protects privacy of medical information, including a cancer diagnosis and treatment, by limiting certain people/parties from disclosing information.
• Sets limits on who can have access to a person’s health information — in all forms.
• Prevents anyone/any party from receiving a person’s health information without that person’s consent and ensures that what is shared are only the relevant details.

In order to take advantage of HIPAA protections, you cannot have a break in coverage lasting more than 63 days. HIPAA limits a new employer’s ability to deny someone health insurance coverage due to a pre-existing medical condition; but there are circumstances in which 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.

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.

The Consolidated Omnibus Budget Reconciliation Act (COBRA) may offer health insurance protection for you and your family members after you leave a company. This law:

• Gives eligible employees and their family members the right to remain enrolled in the same health insurance policy even after leaving a company.
• Allows patients to continue seeing their same doctors for continuous treatment since they will remain enrolled in 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. The length of time one can keep COBRA coverage depends on his or her qualifying event (e.g., 18 months of COBRA coverage after a job loss). Former employees who take advantage of COBRA must pay the monthly health insurance premium themselves. To learn more about COBRA, check out the U.S. Department of Labor’s FAQs About COBRA Continuation Health Coverage.

Other Insurance Resources

The Patient Advocate Foundation (www.patientadvocate.org)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 (www.canceradvocacy.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 (www.cancer.org), 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 (800-227-2345) is staffed by volunteers who will provide the same information by telephone.

The National Association of Insurance Commissioners (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.

Updated 2022