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. 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. Sharing what you know about your health insurance with your doctors will help them recommend medical care that is covered by your health plan.

Knowing your rights as a patient

If you are living with metastatic breast cancer, 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 was passed into law in 2010. 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 conditions
  • the entitlement to certain preventative 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 for a more in-depth look at how you are legally protected as a patient.


Analyzing your current health insurance plan and considering others

“There are some things that can be done proactively to reduce the financial burden of cancer. The number one thing someone can do is make sure they have adequate health insurance,” says Joanna Morales, Esq, CEO of Triage Cancer, a national nonprofit providing education and resources for cancer survivorship.

Some people with metastatic breast cancer let their insurance lapse. There can be different reasons for this. Often, it’s leaving work or changing jobs that leads to losing employer-provided coverage. But it’s important to maintain coverage now. If your coverage does end for any reason, you can find new coverage in a few ways:

  • With your former employer’s help, you can sign up for COBRA (which stands for the Consolidated Omnibus Budget Reconciliation Act) to continue on the plan you had with your employer.
  • You can move to a spouse’s plan.
  • You can find out whether you are eligible for Medicaid or Medicare.
  • You can buy a private insurance plan at

In choosing a plan, consider what level of coverage is appropriate for your needs, Ms. Morales says. A higher monthly membership fee (also known as a premium) may seem like a difficult expense to pay. But as you face expensive and ongoing breast cancer treatments, a plan with higher premiums and better coverage can save you thousands of dollars in out-of-pocket costs. Higher premiums often mean lower deductibles, lower co-pays, and lower out-of-pocket maximums (the highest amount an insurance policy can require you to pay out of your own pocket during that year).

Finding out what your plan covers

Insurance providers offer a variety of plans with different coverage options. To find out what your current plan covers, call your provider and ask for an up-to-date copy of your plan. When you receive it, make a list of the following important information:

  • Any exclusions or services that aren’t covered: These could include specific treatments, specialists, prescriptions, and other things you want or need 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 out-of-pocket expenses, such as co-payments or deductibles: Some providers may require these payments from you while others may not. Note which services are free of charge and which require payment from you.
  • Any co-insurance requirements: Co-insurance is similar to a co-pay, but is usually a percentage of the total cost of treatment instead of a fixed dollar amount. Since you don’t often know what the amount is until the bill comes, this can make planning harder and treatment more expensive. For some kinds of care, you may be required to pay a co-pay and a co-insurance amount.

Making a list of costs will allow you to budget for your medical expenses and stay in control of your finances. Many insurance providers and employers offer comprehensive health plans that may cover more than your current plan does for a higher monthly premium. If you find that your expenses are high with your current plan, consider whether switching to another plan might be more cost effective.

Exploring plan requirements and limitations

Health plans differ based on what employers choose to offer, what each plan does and does not cover, and any rules you need to follow to get treatment. To keep your costs as low as possible, pay special attention to the following parts of your plan:

  • Referrals and specialists: Some health plans require you to see your general or primary care doctor for a referral before you are able to 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 with your plan by calling your plan’s customer service number or calling the offices of the specialists you want to see.
  • In-network vs. out-of-network providers: Many insurance plans require insurance holders to see doctors in their “network” in order to pay the lowest possible fees. If you visit an out-of-network provider, you will likely have to pay a higher co-pay or the whole cost of treatment. HMO, PPO, and POS plans may all offer some coverage for in-network and out-of-network providers, but depending on your plan, the cost of seeing an out-of-network provider will vary. Stay in network, if possible.
  • Pre-authorization: Some insurance providers require you to gain their approval for a treatment or diagnostic test before receiving either so they can determine if the tests are medically necessary. Someone at your doctor’s office will usually handle getting pre-authorization for you. The process can take a few hours to a few days.
  • Prescriptions: Find out if prescriptions are covered and if you need to get name brand or generic medicines in order for insurance to cover costs.

Asking for professional help

Studies show the stress of healthcare costs can affect your health. People who pay the out-of-pocket full charges for medicine are less likely to take it as recommended than people who get assistance. And overall, more financial distress has been linked to people reporting a lower quality of life.

Yousuf Zafar, MD, an associate professor of medicine at Duke University, explains that when people are struggling with bills, they may try to stretch treatments out to save money. “They might not take their treatment as prescribed, they might take less of their treatment, all to try to make ends meet,” he says.

Not taking treatment as recommended can be dangerous and increase the risk of breast cancer growing or spreading, or the treatment not working as well as it should.

No one expects you to pay for your treatments or manage your treatment planning on your own. If your having trouble paying for treatment, know that there are things you can do:

  • Consider getting help from a professional who specializes in healthcare management. You can find professional financial help by asking your healthcare team or your insurance provider.
  • Your insurance provider has case managers who are available to help you get the most out of your insurance. If you ever need to negotiate the cost of healthcare with a doctor or hospital, or have questions about your policy, a case manager can help.
  • Your healthcare team may include a patient navigator or oncology social worker. These members of your team are there to advocate in your best interests and communicate between your doctors and insurance provider. If you don’t already have a patient navigator or social worker on your healthcare team, ask to add one.
  • Your employer may have someone on staff in the human resources department whose job is to manage complex cases that involve medical benefits. If you get your insurance through an employer, contact human resources to see what support they can provide.

Being persistent pays off

Denise Young, 62, of Hatboro, Pennsylvania, has faced many financial challenges through 7 years with metastatic breast cancer. By asking questions and being persistent, she finds ways to pay her bills. During treatment for DCIS in 2009 and the first months after a metastatic breast cancer diagnosis in 2010, Denise kept her job and used up her sick and vacation days.

Since leaving work in 2011, she has relied on different kinds of assistance to pay for living expenses and treatments. Co-pays for ado-trastuzumab emtansine (Kadcyla) alone cost Denise about $1,500 every 6 weeks. She works with her healthcare team to find co-pay assistance programs. When a grant from one foundation runs out, she applies for another, then another. She visited her state representative, who helped her find government programs, including a property tax rebate and help with utilities.

“You learn to do without. [There] are a lot of extras and I don’t need the extras anymore. I’m happy with what I have. I’m just happy to be here,” Denise says.

When there isn’t money left, Denise lets her doctor’s office know and they work out a payment plan. Or, they find ways to adjust the dose or timing of her treatment to make sure she still gets the medicine she needs while she works with different assistance programs.


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Reviewed and updated: July 20, 2020

Reviewed by: LBBC Staff


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