Managing Cancer Costs and Medical Information
People with cancer and their families often worry about how they will pay for cancer treatment. It can be very expensive, even when you have insurance. Having cancer may also make it hard to work and pay bills. And keeping track of tests and treatments, paperwork, and other records can seem overwhelming.
Financial toxicity is a term used to describe problems a cancer patient has related to the cost of treatment. And it has become more and more common for people with cancer and their loved ones. However, there are some steps you can take to help you with the costs related to cancer treatment.
How to Understand Your Medical Costs from Cancer Care
Whether you're someone who feels financially healthy or a person who is worried about how to pay for cancer treatment, it’s important to understand the costs of your cancer care. Because of the many specialists involved, the type of cancer you have, and the different tests and treatments you may need, knowing what costs to expect is key. Some tips to be sure you understand your costs are below.
Know your medical costs from the start of care.
Costs vary greatly depending on where you live, what insurance you have, and what each hospital charges. You will also want to think about the costs of drugs, travel, childcare, or anything else that may be a result of your having cancer. As much as possible, know what to expect about costs from the start.
Know the costs of clinical trials.
If you're taking part in a clinical trial, there will be two types of costs: patient care costs and research costs. For more details about both, see Paying for Clinical Trials.
Learn about payment options for medical bills.
Talk with the billing office or a financial counselor at the hospital. If you’re worried about paying medical bills, ask them about options to make payment more manageable, such as:
- payment plans
- reduced rates
- patient assistance
- help from charities
Talk to your doctors if you have worries about paying for cancer treatment.
Tell your health care team if you think the costs of care could be a burden for you. This is important because:
- although talking with them about these issues may feel uncomfortable, your doctors are there to help you.
- your doctors need and want to know how costs are affecting you.
- decisions about what treatments to use and what medicines to prescribe can be made with your concerns in mind.
- they can point you to resources that can help you.
Many patients say it makes them feel better to share their concerns about costs with their doctor. The more your health care team knows about your circumstances, the more they can be partners in your care.
Ask the hospital social workers for help in learning about programs beyond insurance.
Social workers might be able to suggest organizations or other programs that could help you pay for cancer treatment.
If you work at a company or organization, contact your human resources department.
Your employer may have a specific person who can answer questions about your insurance plan or provide a contact name for more detailed information.
Get help understanding your medical bills.
It’s normal to be confused about your bills, so don’t feel shy about asking questions. You can ask:
- someone in the billing office at the hospital.
- a social worker at the hospital.
- a trusted friend or family member. See if they can help make insurance-related calls or help organize and track bills and reports.
- people who offer services to help with bills and insurance. These can include patient advocates and medical billing advocates. Although they charge a fee, in the long run they may save you money by helping you manage the costs of your care.
Look into payment options for other household bills.
If you're having a hard time paying your monthly bills (such as mortgage, rent, or utilities) during your cancer treatment, talk to the bank or the companies that you owe. They may be able to set up a payment schedule to keep you from falling behind. It’s important to reach out to creditors as soon as you think you could have financial problems.
Learn which resources help pay for costs of cancer care
There are a number or organizations that help people with cancer and their family members with some of the costs of cancer care. This support includes help with medicines, travel, lodging, and general living expenses. Some examples are:
- CancerCare offers some financial assistance and also provides resources and a searchable database, A Helping Hand for finding financial and practical help.
- The Cancer Financial Assistance Coalition has a database that lists organizations that provide financial help to cancer patients.
- The HealthWell Foundation assists with copays, premiums, deductibles and out-of-pocket expenses.
- The Leukemia and Lymphoma Society offers financial programs to help people with blood cancers.
For more, NCI's database, Organizations That Offer Support Services, contains lists of organizations that offer emotional, practical, and financial support. You can also call NCI’s Cancer Information Service at 1-800-4-CANCER (1-800-422-6237) to ask for help finding referrals and resources.
There are other nonprofit resources that inform patients about financial and legal issues such as:
- Triage Cancer provides legal and practical help as well as a Cancer Finances tool to help guide you through some key topics in cancer care that may affect your expenses.
- Cancer Legal Resource Center (CLRC). Among other helpful advice, the CLRC's Patient Legal Handbook, on their website, provides information about cancer-related legal issues.
How to Understand Your Health Insurance
It’s normal to feel confused about what your health insurance covers and the details of your plan. But it’s important to understand your policy and to create an organized way to pay and follow up on health care bills. Dealing with insurance often takes time and effort and can be a large burden when going through cancer care. Ways to manage this include:
Call your health insurance company and talk with a benefits coordinator.
Have your policy in hand. Review which tests, treatments, and drugs are covered and which are not. Ask if your plan will cover any specialists your doctor might refer you to.
Ask about your co-pays, deductibles, coinsurance, and any other costs.
It’s important to know these costs when your care begins so you’re not surprised:
- a copay is the amount you pay for each healthcare service, such as a doctor's appointment or a prescription
- a deductible is the amount you pay for your medical care before your health insurance plan begins to pay
- coinsurance is the percentage of costs you pay for a service that your health insurance covers after you have paid your deductible; for example, you pay 20% and your insurance pays 80%
You may also want to ask if co-pays are due up front and how much they cost. Knowing these charges ahead of time will help you make plans for payment.
Be aware that the No Surprises Act bans surprise bills for emergency services and other care received from out-of-network providers in an in-network setting. Learn more about the No Surprises Act and how you’re protected from unexpected costs.
Ask how and when to make payments for your medical bills.
Find out how you should pay your balance. For example, do you file a claim? Does the insurance company pay first? Or do you pay the bill and then get reimbursed?
Understand your Explanation of Benefits (EOB) forms.
Your EOBs are the forms you get from your insurance company that list the cost of services and treatments you had and how much of the fee was paid for under your policy. EOBs are not bills.
Know the steps to take to get uncovered treatment approved.
Your doctor and hospital billing department will be able to help you with the steps you need to take to get your treatment covered. Most likely, if your doctor feels that you need a test or procedure that is not covered by your insurance policy, you will ask if they will write a letter stating why it is needed. You will then submit this letter to the insurance company. If the company does not agree to cover the treatment or procedure, you can go through its appeals process.
Request to have a case manager at the insurance company assigned to you.
This way you can talk with the same person each time you have a question or concern.
For questions about Medicare coverage, go to Medicare.gov or call 1-800-MEDICARE. Medicare is government health insurance for people age 65 and older. Among other things, you can learn about the drugs that are covered in your plan, what to do if you have other insurance, and the claims and appeals processes. The State Health Insurance Assistance Program (SHIP) provides state specific information, referrals, and counseling to Medicare recipients and their caregivers.
For questions about Medicaid coverage, go to Medicaid.gov or call the Center for Medicare & Medicaid Services at 1-877-267-2323. Medicaid gives health benefits to people with a limited income and their families. The program is run by each state, and therefore states may differ in who is eligible and in what benefits they cover. To learn what your state covers, see Contact Your State with Questions.
Review insurance guides from trusted organizations.
Look online for guides that explain how insurance plans work. Some examples are:
- Coverage to Care (C2C) from the Centers for Medicare & Medicaid Services
- Health Insurance from MedlinePlus
- Health Insurance: Understanding What It Covers from the American Academy of Family Physicians
If you don't have health insurance, visit HealthCare.gov. This is a database of healthcare coverage options provided by the U.S. Department of Health and Human Services. Consumers can search online for health insurance options specific to their life situation and local community.
If you can’t afford insurance and are not eligible for Medicaid or Medicare, ask about charity care and sliding-scale programs (in which fees are based on your income) at hospitals and clinics. Some hospitals are required to see patients who are uninsured. Contact your local department of public health or social services, or the business office of your hospital of choice for more information.
How to Save Money on Pain Medicine
Cancer pain is a common side effect of cancer and its treatment. If the cost of pain medicine is an issue for you, talk to your doctor. They may be able to choose a drug for you that works for your budget. But do not skip doses or save them for later. Doing so will interfere with your pain control. To save money on pain medicine, consider the following tips:
Ask your doctor if there are generic brands of your medicine available.
These usually cost less than brand-name medicines. You can also ask about the form of the drug. Pills may cost less than other forms of medicine.
Ask your doctor if there's a way to adjust your dose.
Sometimes your prescription can be increased so that you can split your dose in half to save money. But never split doses on your own. This could be harmful to you.
Ask your doctor for medicine samples before paying for a prescription.
You can’t get samples of opioids. But you can ask your doctor to write only part of the prescription. This way you can make sure that the medicine works for you before buying the rest of it. This will only help if you pay by the amount you buy. For some insurance plans, you pay the same amount for part of or the whole prescription. Find out what will work best for you.
Ask if you can buy your prescription drugs from a mail-order pharmacy.
Many insurance companies offer the option of getting prescriptions through mail-order pharmacies. Sometimes mail order is cheaper than buying drugs at a local pharmacy. But first make sure that the medicine works for you. Also, be aware that you can’t order opioids in bulk or through the mail.
Find out about discount drug programs.
Some organizations and drug companies have special programs that help pay for prescription drugs or help you find medicines at a lower cost. Ask your nurse or social worker about these programs. Or go to a company's website to learn about their discount programs. Some examples include:
- GoodRx. GoodRx compares prices and provides coupons for FDA-approved drugs at over 70,000 pharmacies. Your medicines may cost less with the coupon than with your insurance.
- Medicine Assistance Tool. A search engine that helps find drug manufacturers who have programs that provide free or low-cost drugs to people who meet their guidelines.
- NeedyMeds. This organization lists programs that help pay for medicines and supplies. You can search by medicine or company name.
- RxAssist. An online resource that lists drug company assistance programs, state programs, discount drug cards, copay help, and more.
- Rx Outreach. A nonprofit, mail-order pharmacy that provides affordable medicine to people in need through its website or by phone at 1-888-RXO-1234 (1-888-796-1234).
Keep Track of Key Medical Information
As challenging as it may be, having records of the medicines, tests, and treatments you receive is very important. It may be helpful for you to get a plan in place for organizing information about your care from the very beginning of treatment. Here are some ways to keep track of the medical care you receive:
Ask for and keep copies of treatment plans and results.
Keep these in a file folder, or take photos and save them on your computer. Other items to record are:
- dates of each medical visit
- tests and procedures received, with dates and results
- treatments received, with dates
- side effects and symptoms you have had, with dates
- any medicines prescribed
- other supportive or complementary care received
Here is a sample chart showing the type of information that is helpful to keep handy and up-to-date.
Use the electronic tools provided by your doctor and others
Some health care providers, insurance companies, and employers give patients access to tools on the computer. For example, you can set up a personal health record (PHR) that allows you to enter, manage, and track important medical information. A PHR is similar to an electronic medical record that your doctor may keep, except that you are the one who keeps the PHR and controls who sees it.
Use a notebook or journal to keep track of details.
Write down details about side effects or questions to ask the doctor. Bring it with you to medical visits to take notes and to refer back to.
Ask if you can record talks with your doctor.
Ask if you can record the talks you have with your doctor with a recorder or mobile device to help you remember and track information. It will also make it easier for you to listen during the conversation itself, knowing you won’t miss anything.
Keep a calendar or daily planner just for medical information.
Track daily events, appointments, and important dates to remember.
Use apps on your mobile device or computer.
There are many apps that can help you remember and organize information. Look for them wherever you like to buy apps. For more information, go to HealthIT.gov.
Keep a sheet with the heath information below handy for yourself and others:
- names and contact information of the people on your health care team
- diagnosis information, such as type and stage of your cancer
- your treatment plan from your doctor
- possible life-threatening side effects or changes in health to be aware of and for which urgent medical care should be sought
Talk with a social worker at the hospital to learn more about ways to track key medical information.
It’s not important which system or tool you choose, but that you use something to keep everything organized and easy to find.
Organize Medical Bills and Statements
Create a system to track your medical bills and the EOB statements from your insurance company. Doing so may allow you to spot billing problems. Some ways to keep your bills and other financial paperwork organized include:
Keep medical paperwork in one place.
If you get your medical bills in the mail, put them in a single folder or binder. If you get your bills online, store them in a file folder on your computer. To be safe, print out hard copies to store in a separate folder as well.
Create a special email account just for medical issues.
Use this account only to communicate with the hospital and the insurance company.
Organize health care bills and statements.
For example, you could keep a separate folder for each month, or a separate folder for each kind of paperwork.
Always check the bills and statements you receive.
Match each bill you receive to the EOB statement from your insurance company. Ask about any differences you see between the EOB and the bill. Always speak up if you think your bill is wrong. It’s your right to question your bill with the doctor or the insurance company. You may find it helpful to keep a record of your conversations. Here is a sample chart to note the details of what you are told.
More Tips to Manage Costs of Cancer Care
Follow your treatment and medicine schedule.
Extra costs can result from unnecessary trips to the emergency room or hospital. It’s important to take care of yourself and follow the treatment and medicine plan your doctor prescribed for you. Doing so may limit trips to the hospital you don't need.
Know the details of your home care before you leave the hospital.
Make sure you know how to care for yourself at home before you leave the hospital. If you don’t fully understand your discharge instructions, ask the staff to explain them to you again. Have someone with you who can also hear the instructions and take notes. The more information you have, the more you can avoid unnecessary visits to the doctor or emergency room.
Ask for help with travel costs.
Travel costs can add up for patients and families. If the costs of transportation are an issue for you, talk to your social worker about organizations that provide rides or help with travel costs. Or contact NCI's Cancer Information Service at 1-800-4-CANCER for more information.
Look at online tools that help you with money and budget.
There are many online tools designed to help you manage your money. For example, the National Council on Aging has a BenefitsCheckUp to help you find benefits you may qualify for or programs that can save you money. There are many tools available online, so choose one that feels right to you.
Get emotional support.
Stress can affect your physical health, which can mean more visits to the doctor and extra costs. If you feel upset and confused about financial issues or with the burden of having cancer in general, seek help early on. It’s important to ask for emotional and social support. Talk to friends and family about your stress. Let them know how you feel. Or ask for help from a social worker or other trained professional. They may be able to help you cope with your feelings.
Look for ways to ease the tasks of daily life.
If you have to manage financial issues on your own, it can take up a lot of your time. It might help to arrange automatic payments for monthly bills. Or seek help with errands or chores you have to do. For example, ask friends to pick up your kids, bring meals by occasionally, or run errands for you. Or ask if they could help out by making non-medical phone calls or writing notes.
To learn about what the research shows on the risk of having financial problems during cancer treatment, see the PDQ summary, Financial Toxicity (Financial Distress) and Cancer Treatment. Also see NCI's 2022 blog post on how people with advanced cancer often have financial problems due to the costs of their care.