Cancer is a very expensive illness. For people without insurance, the direct medical costs can be a serious obstacle to obtaining care. But even for those with insurance, most are unprepared for the out-of-pocket expense of their cancer treatment. Some of these costs can include:
Direct medical costs. Doctors’ fees, hospital charges and medication costs may or may not be covered, even if you have health insurance. For example, many people find that their insurance provides only limited coverage for prescription drugs.
Related non-medical costs. The cost of transportation to and from treatment, over-the-counter medications, home care and medical devices or supplies can add up. These costs are usually not covered by health insurance and must be paid out of pocket.
Daily living expenses. Costs for food, child care, housing, utilities and other daily living expenses may suddenly become difficult to pay if a person with cancer or a caregiver needs to stop working.
Getting organized can give you a greater sense of control over your life and priorities, including financial matters. This E-booklet will help you better understand health care insurance and provide you with the tools you need to cope with the cost of cancer.
Review your insurance policy, and contact your insurance provider with any questions. First and foremost, have and read a copy of your insurance policy, or a summary description of your insurance policy. This will outline your benefits, any coverage limits and the appeals process. Your insurance company can also be a good resource to call if you have questions about what is or is not covered. Understanding your insurance policy and staying up-to-date on your bills can help you avoid claim denials (when an insurance provider refuses to pay for a treatment or procedure), which can be costly and time-consuming. You can find more information on health insurance in the next chapter.
Ask your insurance provider to assign you a case manager. A case manager can help you stay organized and help navigate your policy. They may also be able to assist you by letting you know if your insurance provider offers a payment plan, if your provider can reduce some of your charges or if your provider has special funding available.
Do not delay applying for benefits, as it can take a long time for them to process. There are a number of federal and state programs that provide financial benefits to individuals and families, such as Social Security, Medicare, and Medicaid. A social worker can direct you to the governmental agencies that oversee these programs.
If you’re not covered by health insurance, talk to the financial department at your treatment center or your local health department as soon as possible. It’s important for you to find out which benefits you may be eligible to apply for.
Read CancerCare’s fact sheet, “Cancer and the Workplace,” to learn how the Americans with Disabilities Act and the Family and Medical Leave Act can help.
Keep a diary of your medical expenses and any communications related to your finances. This will help you anticipate and prepare for expenses related to your treatment, and can be useful if you need to dispute a charge. In addition, staying organized can help make this information feel less overwhelming.
Talk to your health care team. Oftentimes, patients and their families do not want to talk to their health care team about paying for treatment. However, talking to your health care team can help ensure that you have access to the treatments you need. Physicians and providers can sometimes work together to find ways to reduce the cost of treatment without reducing the quality of the care you receive. Some providers will work with patients to set up a monthly payment plan. A social worker or financial counselor may be able to help you understand your insurance coverage and help you find further assistance, including financial aid if you are eligible. Read CancerCare’s fact sheet, “‘Doctor, Can We Talk?’: Tips for Communicating With Your Health Care Team,” to learn how you can communicate more effectively with your health care team.
Make sure you’ve received any necessary authorization before undergoing major medical procedures. Note that some insurance policies require that major medical procedures, including radiology procedures such as PET scans and MRIs, be pre-authorized by your insurance provider.
Understand ahead of time which treatments and medical services your insurance covers, and whether you are still responsible for any out-of-pocket expenses. A good first step is to contact your insurance company using the telephone number found on the back of your insurance card.
Here are some important questions to consider and ask:
- How much is your deductible? A deductible is the amount of money you are expected to pay out-of-pocket towards your health care on a yearly basis, before your health care insurer pays. For example – if your deductible is $3,000, you are responsible for paying the first $3,000 of medical expenses at the start of each year, before your insurance begins to cover costs.
- What medical procedures and expenses does your insurance plan cover?
- Do any of your medical procedures require a co-payment? A co-payment is the amount of money you are expected to pay out-of-pocket each time you receive a particular type of health care service. For example – if your plan requires a $50 co-payment for chemotherapy, you will need to pay this amount each time you receive the treatment, even if you have already paid your yearly deductible.
- Can you appeal decisions your insurance provider makes about which medical procedures and expenses they cover?
- Does your insurance plan cover a second opinion?
- Do you need a referral to see a specialist or another doctor besides your primary care doctor?
- How can you find a specialist in network? Any health care provider who is “in network” has already contracted with your insurance company to accept specific (and often discounted) rates for their services. This can mean that your out-of-pocket expenses may be lower when you work with these providers.
- Does your plan cover costs related to travel and lodging?
- What fertility preservation options are available within your plan?
- Does your plan cover the costs of a clinical trial?
Medicare is a federal health insurance program for individuals 65 or over. It may also be available to individuals who have been deemed “disabled” by the Social Security Administration for two years. There are four components to Medicare. It’s important to know what coverage is provided in each component to receive the best care.
Part A covers certain inpatient hospitalization, hospice care and limited home care services. When an individual becomes eligible for Medicare, Part A is typically available with no monthly cost. If you have paid Medicare taxes while working, Part A doesn’t require any premium.
Part B covers outpatient services like doctor’s visits and preventive services. Part B includes a deductible (this is the amount of money you are expected to pay out-of-pocket towards your health care before your health care insurer pays) that may change year to year.
Part C (also known as Medicare Advantage) offers private health plans and can be useful for those looking for all-in-one medical and drug coverage. However, some Medicare Advantage HMOs restrict which doctors and hospitals you can use. These plans must offer at least the same benefits as other parts of Medicare that are available but have different rules, costs and coverage restrictions.
Part D (also known as Medicare Prescription Drug Plan) covers outpatient prescription drugs. Be aware of Medicare “gaps.” Even with Medicare A and B there are still “gaps” in coverage. For example, there is a 20% co-insurance fee for Part B services, and neither A nor B offers drug coverage. Some individuals choose to supplement their coverage with a retiree plan if their former employer offers one.
Learn more information on coverage and deductibles for each part of Medicare by visiting www.medicare.gov or call 800-633-4227.
When deciding on a Medicare plan, know what part(s) can work best for you. Part A and Part B can cover chemotherapy but there may be out-of-pocket costs, like a co-payment. Cancer screenings, such as colonoscopies, are also covered by Part B.
Clinical trials are research studies that evaluate new cancer treatments. Clinical trials may provide an opportunity for patients to access the latest in cancer care and help identify new therapies for people with cancer. If you are interested in participating in a clinical trial, Part A and/or Part B may cover some of the costs. It may be helpful to ask before enrolling in a clinical trial what your Medicare plan will cover.
Before seeing a doctor, call ahead to make sure the doctor accepts Medicare. You can learn more about Medicare coverage options and find plans in your area by visiting the Medicare website (www.medicare.gov). An oncology social worker at CancerCare can also help. Call 800-813-HOPE (4673) and speak with a CancerCare professional oncology social worker who can help you understand Medicare and your insurance options.
Medicaid is a state-administered health insurance program that provides free or low-cost coverage to millions of Americans. In the 30 states that have chosen to “expand” Medicaid, it covers all children and adults below 138% of the Federal Poverty Level, which for 1 person in 2016 is approximately $16,240. In the remaining 20 states, it only covers low-income families with children, pregnant women, the blind, and the disabled. To see if your state has expanded Medicaid, and to apply, visit www.healthcare.gov.
When You’re Uninsured
Being diagnosed with cancer and not having health insurance can bring many challenges that are stressful and emotionally difficult. Feelings such as uncertainty and anxiety are very common, but these should not keep you from getting treatment. There are ways to get health insurance or find the resources you need. Five ways to get health insurance:
Your, or your spouse’s, employer or union. If you or your spouse has a job that offers health insurance, ask if you’re eligible to receive it or buy into it. If you had insurance but lost your job within the last 60 days, ask if you’re eligible for COBRA. COBRA is a law that lets you keep your insurance for 18 months, sometimes longer. You pay the full cost.
Your school. If you are currently a full-time or part-time student, check with your college or university to see if you can get coverage through them.
Medicaid. To see if your state has expanded Medicaid, and to apply, visit www.healthcare.gov.
Medicare. If you are 65 or over, or have been deemed disabled by the Social Security Administration for two years, you may be eligible for Medicare. Contact www.medicare.gov for more information.
Purchase it on your own. You can buy insurance either directly through an insurance company, or through your state’s Marketplace/Exchange. If you buy it directly through an insurance company, you will not be eligible for discounts based on your income. If you buy it through your state’s Marketplace/Exchange, your income will be taken into account, and you may receive an immediate subsidy, which will lower the cost of your premiums, and possibly your deductibles and co-pays as well. To find your state’s Marketplace, go to www.healthcare.gov. Please note: whether you buy it directly from an insurance company or through the Marketplace, you can only buy insurance during Open Enrollment. Open Enrollment occurs once a year, generally between November and January. There are a few exceptions to this rule—if you lose your job-based coverage mid-year, get married, have a baby, move to another county or state, or become eligible for Medicaid, you are eligible for a special enrollment period. For more information on special enrollment periods, visit www.healthcare.gov.
The Affordable Care Act
Millions of people have been able to enroll for health care coverage through the Affordable Care Act (ACA).
Key Features of the Affordable Care Act:
- People with pre-existing conditions, including cancer, can buy health insurance through online insurance Exchanges, also known as Marketplaces. Exchanges allow you to compare plans by benefits, price, provider participation and pharmaceutical coverage.
- Health plans must cover essential health benefits including cancer treatment and follow-up care.
- Health plans must also cover check-ups and preventative services (e.g., cancer screenings, including mammograms and colonoscopies), and there are no co-payment or deductible costs. If you’ve had a history of cancer, these tests may be considered diagnostic, not preventative, and you may be responsible for the cost. Please check with your insurer.
- Young adults can stay on their parent’s insurance plan until age 26.
- Insurance companies cannot deny coverage to people based on their medical history or charge people who have existing health issues more.
- Insurance companies can no longer end coverage or impose lifetime or annual dollar limits on coverage because a person gets sick.
- Insurance companies are required to provide more details about their health care plans.
- Health care plans on the Exchanges limit the out-of-pocket costs and deductibles for patients.
- New rules and rights exist to help patients appeal claims that are denied.
With an uncertain future for the Affordable Care Act, people affected by cancer are understandably concerned. It’s important to stay informed and share feedback and personal experiences with elected officials. Here are resources that can help:
- Kaiser Family Foundation (www.kff.org/health-reform)
- Families USA: The Voice for Health Care Consumers (www.familiesusa.org)
- National Coalition of Cancer Survivorship (www.canceradvocacy.org)
- American Cancer Society’s Cancer Action Network (www.acscan.org/what-we-do/access-health-insurance)
- Medicare Rights Center (www.medicarerights.org)
Contact Elected Officials
- VoteSmart (www.votesmart.org)
- Social media contacts for elected officals via Triage Cancer (www.triagecancer.org/congressional-twitter-handles)
Also, you can contact your elected officials and share your health insurance concerns. To find your elected officials, visit www.votesmart.org/officials. Social media contact information for current members of Congress can be found on www.triagecancer.org/congressional-twitter-handles.
When you or a loved one has received a cancer diagnosis, money may be the last thing you want to think about. But taking control of your finances from the start may be the best way to prevent a crisis later on.
Keep track of important papers. Many people find it helpful to keep their records and paperwork in one place for easy reference. Important documents may include:
- Copies of medical records
- Prescription information
- Health insurance records
- Disability insurance
- Long-term care insurance
- Veterans benefits
Get a handle on your income and expenses. Figure out how much money is coming in to your household, how much you spend and what you spend it on. Contact your gas, electric, phone and/or mortgage company and ask about setting up a payment plan. Think about how your household could either earn more income or cut back on spending. Do you have money saved for an emergency? Do you have assets (a home, other property, a retirement plan, life insurance) that you can use to obtain cash?
Stay on top of medical bills. The consequences of medical debt are staggering and unfortunately all too common. Medical debt can be a major burden and source of continuing stress for many living with cancer. If you find yourself behind on paying medical bills, there are resources that can help. The Patient Advocate Foundation’s (www.patientadvocate.org) case managers can provide guidance and support and can intervene on your behalf regarding medical debt. They also maintain a network of volunteer attorneys. Lawhelp.org provides referrals for affordable and/or free legal assistance programs in one’s area and advice about bankruptcy protection and other financial issues. For more information on legal help, read CancerCare’s fact sheet titled, “Legal Assistance: Finding Resources and Support.” See the next chapter for more tips on managing medical debt.
Let your creditors know about your financial situation. If you’re having trouble paying your bills, it’s best to address the problem now rather than let the bills pile up. You can often negotiate with creditors. A nonprofit credit counseling service may be able to help you work with your creditors to set up a viable payment plan.
Personal financial planning. Consider seeking advice on your financial situation from a professional. An accountant may be able to help you save money on your income taxes. For example, you may qualify for tax credits that will reduce your taxes. If you have a lot of out-of-pocket medical expenses, you may be able to reduce your taxes by deducting some of those expenses from your income. A financial planner may be able to help you take control of your finances and plan for your financial future. Look for free or low-cost financial planning talks sponsored by organizations such as AARP (www.aarp.org) or by investment management companies.
Get help. Financial stress often causes emotional stress. Oncology social workers are licensed professionals who counsel people affected by cancer, providing emotional support and helping people access practical assistance. CancerCare’s oncology social workers are available to help face-to-face, online or on the telephone to find local resources, free of charge. To learn more, visit www.cancercare.org or call 800-813-HOPE (4673).
If you find yourself behind on paying medical bills, there are resources that can help.
If You Have Insurance:
You have the right to appeal if your health insurance company denies coverage for any aspect of your cancer care. Find out from your insurance company what you need to do to appeal a denial of coverage. If your appeal is denied, you may be able to get help from your state’s insurance department.
Approach your treatment center to find out whether they will either lower your bill or work to address this sizeable debt. Some facilities provide funding to offset any care that isn’t covered by insurance, though you will be expected to provide proof of this financial situation. Also consider asking the hospital or doctor to consider the insurance payment as “payment in full.” Many people don’t think to do this, and it is often more successful than expected. Some hospitals have funds to offset medical services that aren’t fully covered by insurance.
Try to negotiate the outstanding balance by asking for a discount. It may be possible that you could get a discount if you pay the outstanding balance in a lump sum. You can also set up a payment plan.
Whether or Not You Have Insurance
Double check all bills and EOBs (explanation of benefits). You’d be surprised how often billing mistakes are made. If you don’t receive an itemized bill, ask for one. Look for incorrect dates of service (for instance, you shouldn’t be billed for the room on the day you were discharged) and fees billed more than once for the same test or procedure.
Speak with an oncology social worker or counselor. This may help you manage some of your stress and come up with a plan so that you feel more in control.
The Patient Advocate Foundation’s (www.patientadvocate.org) case managers can provide guidance and support. They may be able to intervene on your behalf regarding medical debt. The Patient Advocate Foundation also maintains a network of volunteer attorneys.
You may have a legal right to certain benefits. Lawhelp.org provides referrals for affordable and/or free legal assistance programs in one’s area and advice about bankruptcy protection and other financial issues. For more information on legal help, read CancerCare’s fact sheet titled, “Legal Assistance: Finding Resources and Support.”
Learn how financial and co-pay assistance programs can help you. A number of nonprofit organizations provide help for expenses such as co-payments, deductibles, and other medical costs. These programs have their own eligibility rules and may cover only certain cancers. To learn more, read CancerCare’s fact sheets titled, “Sources of Financial Assistance” and “How Co-Payment Assistance Foundations Help.”
Frequently Asked Questions
Q. I’ve been having trouble paying my co-pays. I am self-employed and with the downturn in the economy my business is way down. Where can I go to find some help?
A. Direct financial assistance for co-pays is limited, but it does exist. The following non-profit organizations provide help for expenses such as drug co-payments, deductibles, and other medical costs. Each program has its own eligibility requirements, so please contact them to learn more.
- CancerCare Co-Payment Assistance Foundation
- Patient Access Network Foundation
- Healthwell Foundation
- Patient Advocate Foundation’s Co-Pay Relief Program
- Patient Services Incorporated
- National Organization for Rare Disorders
- Leukemia and Lymphoma Society
- Good Days
- Caring Voice Coalition
- The Assistance Fund
In addition, the Partnership for Prescription Assistance has a comprehensive database of companies that offer their medications at little or no cost to those who qualify.
Q. About six months ago, my five-year-old daughter was diagnosed with leukemia and I had to leave work to take care of her. Now, I’m struggling financially and need help paying the bills. Where can I get help?
A. Children with cancer typically undergo an intense treatment schedule and their care can become a full-time job in itself for the parent or guardian. Unexpected expenses can range from uncovered treatment costs to transportation and child care, as well as those of daily living, which are especially difficult to meet when there is a loss of income. CancerCare, The Leukemia and Lymphoma Society, and the National Children’s Cancer Society, offer limited financial assistance for some treatment and treatment-related expenses for eligible families. The American Childhood Cancers Organization also provides a listing of possible resources.
Ask the social worker at your child’s treatment center for information on organizations in your community that assist children with serious illnesses. In addition, many large treatment centers have special funds for children to help defray the cost of treatment and related costs. Make sure you inquire about whether your treatment center has such a fund, and how you might qualify. Finding help with the expenses of daily living is more challenging. A possible resource includes the 211 referral line of your local United Way which provides links to community programs that may offer financial assistance or practical help. You can also try negotiating payment plans for your monthly bills with your utility company, phone provider and other creditors, who may also offer assistance programs to people in need.
Q. I have metastatic breast cancer. I have to make a long drive once a month and stay over for about two nights for treatment. Is there any help you give for transportation and/or lodging costs?
A. CancerCare offers limited assistance for transportation, home care and child care for people who qualify. Limited funds are also available to assist with certain oral, pain, and anti-nausea medications, lymphedema supplies and durable medical equipment. Please call us at 800-813-HOPE (4673) to apply.
American Cancer Society’s Road to Recovery program provides transportation to and from treatment for people who have cancer and either do not have available transportation or are unable to drive themselves. Volunteer drivers donate their time and the use of their cars so that patients can receive the treatments they need. Call 800-ACS-2345 to find out if Road to Recovery is available in your community.
Joe’s House is an online database listing thousands of places to stay across the country near hospitals and treatment centers that offer a discount for traveling patients and their loved ones. Your local United Way may know of resources that offer financial assistance. To find your local office, please visit www.joeshouse.org or call 651-291-0211 or 211.
Q. My dad has cancer and he is currently at home. He has no insurance, but Medicaid is pending. We’re trying to get hospice or some support. What can I do?
A. Hospice is paid for through the Medicare or Medicaid Hospice Benefit and by most private insurers. If a person does not have coverage through Medicare, Medicaid, or a private insurance company, hospice will work with the family to make sure needed services are provided. In order to receive hospice services, your father’s doctor will need to make a referral to a local hospice provider. You may also contact a local hospice to find out what steps you should take.
The National Hospice and Palliative Care Organization (NHPCO) offers information and resources about end-of-life and hospice through its Caring Connections website. The Caregiver Resource Directory also can provide you with extensive information.
It’s important that you continue to follow-up with his Medicaid application, as benefits will be retroactive to the date when he applied and can be used to pay any medical bills that may be incurred during the application period.
Americans with Disabilities Act (ADA): ADA requires that organizations with 15 or more employees comply with ADA guidelines. The ADA recommends that any accommodation that you need does not cause “undue hardship” to your employer. For more information, call 800-514-0301 or visit the ADA website at www.ada.gov.
Appeal: You have the right to ask your insurance company to reconsider (or appeal) if your insurance denies coverage for any aspect of your cancer care. Find out from your insurance company what you need to do to appeal a denial of coverage. If your appeal is denied, you may be able to get help from your state’s insurance department. For more information on how to file an appeal, visit www.healthlawadvocates.org/get-legal-help/resources/document/FINAL-HLA-Guide-to-Appeals-1-27-16
Claim: A claim is a bill from your health care provider (doctor or hospital). Your health care provider sends a claim to your insurer to be reimbursed.
COBRA (The Consolidated Omnibus Budget Reconciliation Act): COBRA is a law that lets you keep your insurance for 18 months, sometimes more, after leaving employment. You pay the full cost.
Co-insurance: The percentage of a medical charge you are expected to pay after your deductible has been met. For example, if you have a 30% co-insurance, you would pay 30% of a given medical bill while your health insurance would cover 70%.
Co-Payment (Co-pay): The fixed out-of-pocket cost you are expected to pay upfront for your health care services. The amount can vary depending on the type of health care service. For example, your co-payment for an appointment with your primary care doctor may be $25 while a visit to the emergency room may be $250. Some health care services may require you to pay co-insurance in addition to a co-payment.
Deductible: This is the amount of money you are expected to pay out-of-pocket towards your health care each year, before your health care insurer pays. Out-of-pocket expenses typically do not include co-pays. For example – If your deductible is $3,000, you are expected to pay the first $3,000 towards your health care expenses. Your insurance will cover expenses after you have paid $3,000.
The Equal Employment Opportunity Commission (EEOC): EEOC is a federal agency that enforces the provisions of the ADA and FMLA and assists citizens who feel they have been discriminated against in the workplace. If you feel you are being treated unfairly, contact the EEOC at 800-669-4000 or visit www.eeoc.gov.
Family Medical Leave Act (FMLA): FMLA can cover some time off during treatment. Under FMLA, an employee can take up to 12 weeks of unpaid leave per 12-month time period. To be eligible for FMLA benefits, an employee must: work for an employer (one who offers FMLA) where at least 50 employees are employed within 75 miles; have worked for the employer for a total of 12 months; and have worked at least 1,250 hours over the previous 12 months.
Flexible Spending Account: A flexible spending account (FSA) allows you to put pre-tax money from your paycheck into a special account that later can pay for certain medical expenses like copays. Each individual decides how much money per paycheck goes into their FSA account. It’s important to estimate your yearly medical expense that would qualify for FSA because this money typically does not roll over. A FSA can only be set up through an employer. Learn more about your options by talking with your employer about a flexible spending account.
Health Insurance Portability and Accountability Act (HIPAA): HIPAA gives you the right to control who may receive your medical records and which information they may receive. When you visit a health care professional or are admitted to a hospital for the first time, you will receive HIPAA forms. Signing these forms states that you know your rights with regard to control over your medical information.
In-Network or Network Provider: A health care provider selects health care professionals or hospitals to be a part of their insurance plan or network. These preferred health care providers or institutions cost less than others not in-network.
Oncology social worker: Oncology social workers are professionals who counsel people affected by cancer and help them access practical assistance. They can provide individual counseling, support groups, locate services that help with home care or transportation, and guide people through the process of applying for Social Security disability or other forms of assistance. CancerCare’s oncology social workers are available to help face-to-face, online or on the telephone, free of charge.
Out-of-Network or Non-Network Provider: Health care professionals or hospitals not a part of a health care provider’s insurance coverage. Going out-of-network generally costs more.
Medicaid: Medicaid is a social health care program that provides health insurance for individuals with limited resources.
Medicare: Medicare is federal health insurance coverage for those 65 or older. It may also be available to individuals who have been deemed “disabled” by the Social Security Administration for two years. Visit www.medicare.gov for more information.
Network: A network is a large group of health care professionals, pharmacies and hospitals that are selected and preferred by an insurance company to provide care.
Patient Navigator: Navigators provide guidance through the health care system and help with any issues, challenges or barriers. They may offer practical assistance with financial support, transportation and child care. In addition, they may assist in coordinating care with other health care team members.
Pharmacist: A pharmacist is a professional who is qualified to fill prescription medications ordered by a doctor. They often provide information on how to take medications, potential drug interactions and tips on taking prescription medication on schedule.
Premium: A premium is the monthly fee paid to an insurer for health insurance coverage.
Provider: A provider is a health care professional (doctor, nurse, surgeon, etc) or institution (hospital) that provides care.