Understanding health insurance with metastatic breast cancer

Understanding your health insurance plan and what it covers is an important part of managing the costs of any long-term illness, including metastatic breast cancer (MBC). Knowing the terms of your benefits will help you plan ahead for out-of-pocket expenses and help you get the most coverage possible for the tests, treatments, and procedures you need.

In addition to the information on this page to help you understand your plan, we offer a list of health insurance words to know and a guide to help organize your bills, papers, and records.

Knowing your rights as a patient

If you are living with MBC, it’s important to know what your rights and protections are in the healthcare system, and how you can make the most of your health insurance.

The Patient Bill of Rights is a list of regulations created after the Affordable Care Act (ACA) was passed into law. The bill provides protections to patients when they are dealing with health insurance companies. These protections include:

• The right to an easy-to-understand summary of your health coverage and benefits
• The removal of insurance company dollar limits that cover essential benefits, such as doctor and specialist visits, management of chronic disease, prescription drugs, lab services, mental health services, and rehabilitative devices and services
• The ability to get health insurance if you have a pre-existing condition
• The entitlement to certain preventive screening with no fees or copays
• The ability to stay on a parent’s plan until age 26
• The right to appeal payment decisions of private health plans, as well as payment denials

Visit healthcare.gov for a more in-depth look at how you are legally protected as a patient.

Coverage for breast reconstruction surgery: Women’s Health and Cancer Rights Act

The Women's Health and Cancer Rights Act (WHCRA) helps protect women who choose to have breast reconstruction surgery after a mastectomy. The law requires most group insurance plans, health insurance companies, and Health Maintenance Organizations that cover mastectomies to also cover breast reconstruction.

Help paying for screening and diagnostic services: National Breast and Cervical Cancer Early Detection Program

Through the National Breast and Cervical Cancer Early Detection Program, the Centers for Disease Control and Prevention (CDC) provides screening and diagnostic services to low-income, uninsured, or underinsured women for free or at very little cost. The program is funded in 50 states; Washington, D.C.; Puerto Rico; five Pacific islands affiliated with the U.S.; and 13 American Indian/Alaskan Native tribes or tribal organizations.

If you were diagnosed through this program, you are eligible to have your treatment covered by Medicaid. In some states, even if you were not diagnosed through this program, you may still be able to have your treatment covered by Medicaid.

Analyzing your health insurance plan and considering others

Understanding your health insurance plan and what it covers is an important part of managing the costs of any long-term illness. Knowing the terms of your benefits can help you plan ahead for out-of-pocket (OOP) expenses. It can also help you get the most coverage possible for the tests and treatments you need.

Sometimes people with insurance experience a lapse in, or loss of, coverage. There are different reasons for this. Often, it’s leaving work or changing jobs that leads to losing work-provided coverage. Or you can lose coverage because you are no longer eligible for it. But it’s important to maintain coverage. If your coverage is ending, reach out for help. It is important to pick a plan your providers accept to help avoid any lapse in coverage or care. You can find new coverage in a few ways:

• You can sign up for the Consolidated Omnibus Budget Reconciliation Act (COBRA) to continue on the plan you had with your employer. You will likely pay more for your health coverage than you did when you worked for your employer. A social worker or financial navigator can help you explore if there is any premium assistance available to you.
• You can move to a spouse’s plan.
• You can find out whether you are eligible for Medicare or Medicaid.
• You can buy a private insurance plan at healthcare.gov.

Find out what your plan covers

Health insurance providers offer a variety of plans with different coverage options. Call your provider and ask for an up-to-date copy of your plan and make a list of the following:

• Any exclusions or services that aren’t covered. These could include certain treatments, specialists, prescriptions, etc., that your insurance provider will not cover as stated in the plan. For example, many plans do not cover complementary medicine, such as acupuncture.
• Any OOP expenses like copayments or deductibles. Some providers may require these payments from you, while others may not.
• Any coinsurance requirements. Coinsurance is like a copay but is usually a percentage of the total cost of treatment instead of a fixed dollar amount. This can make planning harder and treatment more expensive. You may be required to pay a copay and a coinsurance amount for certain care.

Other things you may want to find out about are available on our health insurance words to know section.

Making a list of costs can help you to budget for your medical expenses and stay in control of your finances. Many insurance providers and employers offer broad health insurance plans that may cover more than your current plan for a higher monthly membership fee (a premium). If you find that your expenses are high with your current plan, consider switching to another plan during an enrollment period.

Explore limitations and requirements

Health insurance plans differ based on what employers choose to offer or what you choose if you are purchasing a plan on your own. Plans also differ in what they do and do not cover and how you need to proceed in getting treatment. To keep your costs as low as possible, explore the following topics to fully understand your plan’s requirements.

• Referrals and specialists. Some health plans require you to see your general or primary care doctor for a referral before you can see a specialist.
• Specialist coverage. Sometimes a healthcare plan will cover certain services from one medical specialist and not another. Find out which specialists participate in your plan.
• Mental health care. Most insurance plans cover some mental health counseling services. Coverage is often limited to a certain number of counseling sessions.
• In-network vs. out-of-network providers. Many insurance plans require members to see doctors in their “network” to pay the lowest possible fees. If you see an out-of-network provider, you will likely have to pay a higher copay or the whole cost of treatment.
• Pre-authorization. Some insurance providers require you to get approval for a treatment or test in advance so the insurance company can decide if the treatment or test is medically necessary. Someone at your doctor’s office usually handles getting pre-authorization for you. The process can take a few hours to a few days.
• Prescriptions. Find out if they are covered, and if you need to get name-brand or generic medicines for insurance to cover costs.
• Hospice care. Most employer-based and private insurance providers offer some coverage for hospice care. Medicare Part A offers hospice benefits for people who are eligible. Some states offer hospice benefits with Medicaid. You may want to find out what your plan covers and what criteria need to be met for you to be covered.

Keep in mind that if insurance denies a health insurance claim, you can appeal the claim denial.

Managing treatment costs related to MBC and whom to ask for help

While the cost of treatment can be a challenge for many people, there are resources available to help. If you are concerned about paying for treatment and other costs, you are not alone.

Talk with your healthcare team about potential costs that could be passed on to you. Learning about treatment costs as early as possible can help you avoid surprises and help you plan. Resources include:

Your healthcare team

Ask your doctor, nurse navigator, or hospital social worker about financial navigation and other resources that may be available to you.

Financial navigators

Many cancer centers have financial navigators whose job is to help people understand coverage and OOP costs. These navigators may also help people apply for programs and help with resources to address OOP costs, and optimize insurance — all to help gain access to treatment and care.

“Financial navigators help people diagnosed with cancer alleviate financial stress so they can focus on survivorship and healing,” says Aimee Hoch, MSW, LSW, OSW-C, FACCC, Grand View Health Cancer Center’s financial navigator.

Aimee created her position at Grand View to meet patients’ unmet needs. As an oncology social worker for years, Aimee had observed that “while people were understandably distressed by the physical aspect of the disease, for many patients, the physical strain was compounded by the emotional stress of how to pay for treatment or even household bills.”

A financial navigator (or social worker) can help by identifying resources for you, which may include:

• Copay card programs, which are often offered by drug manufacturing companies to help people with private insurance pay copayments for the medicines these companies make.
• Patient Assistance Programs (PAPs), which give discounted or free medicines to those who qualify. PAPs are available through pharmaceutical manufacturers (and are also called “free drug programs”).
• Foundation copay assistance, including Patient Advocate Foundation and CancerCare Co-Payment Assistance Foundation and others offer help.
• Hospital financial assistance programs (FAPs) which many hospitals offer. Nonprofit hospitals and many other healthcare facilities are required to offer financial assistance to patients in need. You can find information about these financial assistance programs (FAPs), and if you are eligible to apply, on your hospital’s website or by calling the hospital’s financial services department.

  Note: Many FAPs require you to apply to Medicaid before they consider you. The programs have staff who can help you apply for Medicaid or ask you to do so on your own and let them know the outcome.

Your employer

Your employer may have someone on staff in the human resources (HR) department whose job is to manage cases that involve medical benefits. If you get your insurance through an employer, contact HR to see what support they can provide.

Paying for prescriptions

Prescription medicines often make up a large part of medical costs. If you have limited income or a health plan that has a high deductible or very high copays, covering cancer prescriptions, such as anti-nausea medicine, can become even more challenging.

Resources that can help you pay for prescription medicines include:

• Foundation copay assistance, including Patient Advocate Foundation, CancerCare Co-Payment Assistance Foundation, and others offer help.
• Copay card programs are often offered by drug manufacturing companies to help people with private insurance pay copayments for the medicines these companies make.
• Patient Assistance Programs (PAPs) give discounted or free medicines to those who qualify. PAPs are available through pharmaceutical manufacturers (and are also called “free drug programs”). Your social worker, financial navigator, nurse, or doctor should be able to find out if you qualify.
• Medicare Part D Extra Help Program helps with deductibles and copays for prescriptions.
• Your doctor:
  • Your doctor may suggest generic medicines or give you samples. (This does not apply to oral chemotherapy.) Generic medicines are usually less expensive than brand-name medicines. Samples allow you to try a medicine before you buy the full prescription. Once a prescription is purchased, it can’t be returned.
  • Ask about over-the-counter (OTC) medicines that may have the same effect as your prescription. Find out if the OTC options cost less.
• Your pharmacy or pharmacies:
  • Some charge less than others for the same prescription. Take the time to compare and find the best price. Think about mail-ordering several months’ worth of a prescription if the copay is lower.
  • If your insurance allows you to use local pharmacies, you may save on copays.
  • Keep in mind: Many oral treatments are offered only through specialty pharmacies that are contracted with your insurance.
  • If you don’t have insurance or your health plan doesn’t cover prescriptions, filling only half your prescription at a time may help you save on the up-front, out-of-pocket cost.
• Your insurance company:
  • Use medicines on your insurer’s preferred drug list, if possible. You may have to pay full price for a medicine that is not covered. Check to be sure your prescription is on the list. If it’s not, you can reassess plan coverage during open enrollment.
  • Your insurance case manager can help you figure out what information your doctor needs to submit to the insurance company to get your medicines covered.

More resources for help paying for prescriptions are available on our Financial help and resources page.