Financial matters and metastatic breast cancer

If you have been diagnosed with metastatic breast cancer (MBC), you have enough changes to navigate without the stress of financial uncertainty. If managing your diagnosis has affected your ability to work steady hours and have a regular income, paying for daily living expenses in addition to medical bills can be a new challenge. Many people find that their monthly and daily living expenses — for food, mortgage, rent, and utilities — compete with their healthcare costs.

These costs can lead to financial distress, or financial toxicity.

What is financial toxicity?

Financial toxicity is a term used to describe problems patients may have due to the cost of medical care. Many studies show that people with cancer are more likely to have financial toxicity than people who don’t have cancer. Financial toxicity can lead to:

• Lower quality of life (including poor physical and mental health)
• Debt, bankruptcy, or foreclosure
• Skipping doses of or not filling prescribed medicines to save money
• Inability to pay bills
• Financial burden for caregivers

If you are concerned about managing your finances while living with MBC, you are not alone. About half of people in the U.S. living with cancer face financial toxicity.

People living with MBC can sometimes have costs that are even higher. This is because people living with MBC are living longer than they have in the past. They also have periods of time on and off treatments.

Time toxicity

People living with MBC may also have to contend with time toxicity.

Anyone living with an illness, including cancer, can face time toxicity. That means they spend a lot of time managing care, going to doctor visits, and treating side effects, among other things. Time spent managing an illness impacts time spent at home or doing other things.

Caregivers can experience time toxicity, too.

On this page, you can read about potential costs and ways you can manage them, including:

• How employment status changes can impact finances, and what rights you have
• How legal help can protect you and your financial security
• Types of expenses you may encounter

Changes in your work status and impact on your finances

If you have been diagnosed with MBC, one of your first instincts may be to make sure your job and income are secure. Or maybe you were looking for work at the time of diagnosis.

Whatever your employment situation is, knowing your rights and protections can help you plan. Your rights and protections include:

Protections when disclosing your diagnosis at work. If you decide to share information about your medical condition at work, the Americans with Disabilities Act (ADA) or a state fair employment law may protect you from workplace discrimination. This means that covered employers cannot treat you differently or make work-related decisions (hiring, firing, benefits, promotions, or bonuses) based on your medical condition. Visit Triage Cancer’s Quick Guide to Disclosure for more information.

Protections when disclosing your diagnosis in a job interview. Some people feel very strongly about disclosing their medical condition in an interview. And while the law is protective, if an interviewer does act in a discriminatory way by not hiring you because of your medical condition, it is very hard to know and prove that was why they didn’t hire you.

Protections when taking time off work. Talk to your employer about your protections if you need to take time off from work.

The Family and Medical Leave Act (FMLA) allows up to 12 weeks of unpaid leave per year for a serious medical condition, without losing your job or health insurance benefits.

Protections for health insurance. The Consolidated Omnibus Budget Reconciliation Act (COBRA) is a federal law that allows eligible beneficiaries to keep their existing employer-sponsored health insurance coverage if they stop working. COBRA applies only to private employers with 20 or more employees or state or federal governments. Learn more about state laws on health insurance, employment, and more at Triage Cancer.

Legal help to protect you and your finances

MBC isn’t only a medical issue. It can also come with legal issues. Understanding laws related to treatments, insurance, employment, and other things can help you get the best care while protecting your family, your finances, and your career.

You may want to hire a lawyer who specializes in cancer-related issues. You can also contact The Cancer Legal Resource Center. This program, CLRC:

• Provides information and resources on cancer-related legal issues
• Provides referrals to local legal aid organizations and lawyer referral services
• Connects patients with attorneys in their area who have agreed to give free consultations to clients referred by the CLRC

Other legal resources are available on our Financial help and resources page.

If you think your doctor handled your care incorrectly for your situation or made a mistake, they might have committed negligence or malpractice. If you feel this has happened to you, contact a local medical malpractice attorney as soon as possible. Medical malpractice suits are generally subject to strict time limits, called statutes of limitations. In some states, the statute of limitations is as short as 1 year from the date you were harmed.

If you think you were exposed to a cancer-causing substance on the job, receiving workers’ compensation depends on your ability to prove that exposure happened at work and whether there is a link between the cancer-causing substance and the type of cancer you developed. Resources to help you include:

• Office of Workers’ Compensation Programs

  (866) 487-2365

  Federal program that administers workers’ compensation programs

• Occupational Safety and Health Administration

  (800) 321-7642

  Federal agency responsible for investigating complaints about workplace safety

• National Institute for Occupational Safety and Health
  (800) 232-4636
  Federal institute that oversees research and prevention of work-related injury and illness

If you believe you’ve experienced discrimination at work because of your diagnosis, here are some things to know:

The Americans with Disabilities Act (ADA) protects people with disabilities from discrimination, including discrimination, or unfairness, at work. Disabilities are defined as physical or mental impairments that substantially limit one or more major life activities. The ADA protects people who work at private companies that employ at least 15 people. It also protects those who work at employment agencies, labor organizations, joint labor-management committees, state and local governments, and religious organizations.

If you are still able to do the necessary tasks of your job, you may have some protections under the ADA. Common safeguards and more information about the ADA are offered on our Financial matters, health insurance, and work page.

If you work for a company with fewer than 15 people, check your state fair employment law or contact CLRC to see whether your state offers protections. It’s important to request changes before your work performance suffers, because if your employer is not aware that you need help, they are still allowed to take negative employment actions against you.

It is not uncommon for people undergoing cancer treatment to be forced to leave their jobs if they are not eligible for job-protected medical leave or if their treatment requires more time off than their employer can give them. If you think that your employer might be discriminating against you or not following the law or their own policies, you might want to talk to an employment attorney.

Unexpected or “hidden” costs related to MBC

The financial impact of MBC doesn’t end with medical bills. You may spend more time away from work and in doctors’ offices.

Paying for living expenses in addition to medical bills can be tough. Many people find their living expenses — for food, mortgage or rent, and utilities — must compete with their healthcare costs.

Considering potential unanticipated costs ahead of time will help you plan ahead. These are often called “hidden” costs.

Help is out there, though it may take some work and time to find it. Nonprofit and faith-based organizations may have financial assistance programs for people who need help. Ask questions and do research.

How to get help managing finances

• A hospital social worker or financial navigator can help you understand your health insurance policy and recommend local organizations and resources available to you.
• A health insurance case manager can tell you what information your doctors should submit to get your medicines and treatments covered.
• United Way’s 2-1-1 or 211.org service offers a list of local agencies that can help with things like rent, mortgage, and utilities.
• An accountant or financial advisor (likely to charge a fee) can show you how to manage your money most effectively.

More information, including resources for help with managing your mortgage or rent and support for treatment-related transportation, lodging, and living expenses is available on our Managing the hidden costs of breast cancer page. This page also offers resources for planning for your family’s financial future.

No Surprises Act: Limiting unexpected medical costs

The No Surprises Act tries to limit what you pay out of pocket for medical services, whether you have health insurance or not. A surprise medical bill is an unexpected bill. People can receive surprise bills from a healthcare provider or center for services they did not know at first were from an out-of-network provider or center. A surprise bill can also result from emergency services.