Paying for your child's blood cancer treatment

It is important to understand your expenses and have a plan to manage them. Planning a budget in advance and sticking to it is an important part of managing finances after a child’s blood cancer diagnosis. If you share expenses with anyone else, such as a spouse, partner, or co-parent, work together to create a budget. 

Managing finances and insurance coverage

After a child’s blood cancer diagnosis, you may wish to revisit your financial plans or create new ones. 

When working on or creating a budget, look for ways to reduce expenses. Consider the following questions:  

• Is my family eligible for financial assistance programs?
• How will I pay for my family’s medical care and possible future medical care? (Do I have savings easily available for emergency situations?)
• What do my future financial goals include—retirement, saving for college, owning a home, paying off debt?
• Can any of the expenses be reduced by shopping for a different phone/cable plan or home insurance quote?
• Can I reach out to family members and friends to help with childcare or pet care?
• Should I open a custodial savings account or individual retirement account (IRA) for my child?  

Don’t forget to consider all possible changes to expenses and income, such as:  

• Wages lost from time off work to care for your child
• Transportation and lodging if you live far from the treatment center
• Additional medical expenses, such as nutritional supplements, over-the-counter medications, hygiene products, wigs, etc.
• Childcare for siblings and/or a pet sitter for when you are away 

You may wish to consult a professional financial advisor for expert advice. Financial advisors typically charge a fee for their services. Visit plannersearch.org to search for a certified financial planner professional in your area. Visit Triagecancer.org for more resources related to cancer and finances

Where to start 

You and your family will need to decide how to pay for treatment while managing household finances. You also need to consider additional indirect costs, such as lost time from work, childcare, and travel expenses.

Many excellent guides and tools are available to help you work through these challenges and explore available resources. Start by taking the following steps to manage your finances before, during, and after treatment: 

• Speak with your child’s doctor and ask for a treatment timeline
• Become familiar with your insurance plan's oncology benefits, mail-order pharmacy benefits, and rules for pre-authorization, referral, and claims appeals
• Assess your anticipated medical expenses
• Reduce unnecessary expenses
• Speak with creditors early if you anticipate difficulty making payments
• Keep and organize copies of medical records, bills, receipts, and other important documents
• Review time off benefits from your employer and whether your income might be reduced
• Check to see whether you have home mortgage or car payment insurance to help cover expenses during your illness
• Review and take advantage of disability plans if needed during your treatment and recovery
• Seek access to programs that help insured patients meet their pharmaceutical co-payment expenses

Working with your healthcare team to reduce costs 

It's important to resolve financial issues before they become a source of increased stress or limit your child’s access to needed treatments, prescription medications, or support services. Therefore, discuss payment options with members of your child’s healthcare team or their treatment center’s patient financial services department. 

Parents and providers can work together to devise ways to reduce costs without compromising treatment. Ask your providers about: 

• Switching from a brand-name drug to the generic
• Reviewing a medication list to see whether you're taking nonessential drugs
• Enrolling in a Prescription Assistance Program (PAP)
• Referring you to a public agency or a social worker 

Social workers and caseworkers can: 

• Help you better understand insurance coverage
• Submit claims
• Refer you to assistance programs to help meet the cost of remaining bills
• Offer guidance on submitting the necessary paperwork for Medicare, Medicaid, or other government programs 

Getting organized 

To better manage your health finances and get the most from your insurance coverage: 

• Check that the personal information on your policy is correct
• Review the policy's summary of benefits, noting any coverage exclusions or limits. Don't overlook riders or endorsement forms.
• Keep a copy of all claims and related paperwork, such as letters of medical necessity, bills, receipts, and requests for sick leave
• Keep a written record of phone conversations with insurers
• Check your health policy often to determine what services and medications are covered
• Obtain proof of previous health insurance coverage, called a certificate of creditable coverage, from former employers and insurers
• Pay premiums on time and in full to avoid a lapse in coverage
• Plan ahead for procedures or treatments that need a pre-authorization or pre-certification
• Learn what to do if a claim is denied
• Keep track of all unreimbursed medical expenses. You may be able to claim these for tax purposes.
• Know the laws designed to protect patients and provide continuation of medical coverage (for example, COBRA, HIPAA, Family and Medical Leave Act, Americans with Disabilities Act) 

Use these worksheets to keep track of questions to ask your child’s healthcare and financial team members. Staying organized helps decrease many financial stressors and allows you to focus on feeling better. 

• Financial Checklists
• Insurance Costs Checklist and Budget Form
• Insurance Appeal Tracking Form
• Financial Assistance Record

If a claim is denied 

If your insurance company denies payment for a recommended treatment, you may be able to get a decision overturned by filing an appeal. First, contact your state Department of Insurance to see what information or resources they have available. Then, ask your insurer the following questions when appealing a denial: 

• Can you send me a copy of the denial letter?
• What is the specific reason the claim was denied? (This information should be included in the denial letter.)
• How can I get a current copy of the plan document and plan's Summary of Benefits Coverage (SBC)? (You may need to request these documents in writing.)
• Who can I contact at the insurance company to discuss the denial?
• How can I request a doctor peer review? (A peer review provides the chance for your child’s doctor to discuss their treatment in detail with other doctors, usually within the same geographic area and medical specialty.)
• Can I speak with anyone else if I have questions about the appeals process?
• If a particular drug isn't on the prescription plan's covered drug list (formulary), what is the process for requesting an exception? Can my child’s doctor submit a letter explaining why the drug is needed? 

Use Worksheet 16: Insurance Call Log to keep a record of communications with the insurance company. 

Record the date and time of each call to the insurance company, and the name, phone number, and extension of the representative you speak with. Remain courteous, honor deadlines for obtaining key documents, and submit all necessary paperwork. 

Getting help from family and friends 

Delegate time-sensitive tasks to reliable family members or friends who can be counted on to be thorough and meet deadlines. Ask them to help with: 

• Setting up a record-keeping system to track bills and submitted, pending, and paid insurance claims
• Calling public and private agencies to determine eligibility for financial assistance, entitlement programs, and other benefits and services
• Gathering documents to support insurance claims and appeals
• Following up with the insurance company
• Organizing fundraising efforts

Getting help from professionals 

Professional counselors who staff national organizations that support people with cancer can give you expert advice on how to: 

• Preserve your assets
• Reduce your debt
• Access community resources
• Handle employment issues
• Reduce insurance problems
• Use legal remedies, if and when necessary

Financial assistance programs 

There are a number of ways to find financial assistance for expenses related to your child’s treatment or to replace lost income. 

This type of guidance can be invaluable in helping patients advocate for themselves more effectively. Organizations and government agencies that can help you navigate the healthcare system include: 

• Supplemental Nutrition Assistance Program (SNAP) benefits, more commonly referred to as “food stamps,” can help with food costs. To apply for benefits or for information, contact your local SNAP office. Visit https://www.fns.usda.gov/snap/state-directory to find a list of local offices.
• Special Supplemental Nutrition Program for Women, Infants, and Children (WIC) provides nutrition support for low-income pregnant women and children up to age 5. Visit www.fns.usda.gov/wic for more.
• The Low-Income Home Energy Assistance Program (LIHEAP) provides help with paying electric bills. To learn more or to apply, contact the local LIHEAP office. You can find your local office at https://liheapch.acf.hhs.gov/search-tool/ or call The National Energy Assistance Referral hotline at: (866) 674-6327.
• Triage Cancer is a national nonprofit organization that provides education and resources on the entire continuum of cancer survivorship issues for survivors, caregivers, and healthcare professionals. Triage Cancer created an online toolkit for navigating finances after a cancer diagnosis. Visit Triage Cancer.
• CancerCare is a national nonprofit agency that provides free services, support, information, and practical help to anyone affected by cancer. The organization offers guidance on financial issues and gives financial assistance to help with some costs. Visit CancerCare or call (800) 813-HOPE (4673).
• Patient Advocate Foundation (PAF) draws upon the expertise of case managers, attorneys, and doctors who work with patients and their insurers, employers, and creditors to resolve insurance problems, job discrimination issues, and debt crisis matters. Visit PAF or call (866) 512-3861 for a comprehensive state-by-state directory of financial resources for housing, utilities, food, transportation, medical treatment, and children’s needs.
• Localhelp.healthcare.gov. Get local help from an agent, broker, or assister near you. Visit Localhelp.healthcare.gov.
• Healthcare.gov. This government-maintained website includes information about the healthcare changes happening as a result of the Patient Protection and Affordable Care Act of 2010 (ACA), also called Obamacare. The site has information about insurance options in your state; comparisons of quality of care in hospitals, home healthcare agencies, and nursing homes; an overview of the healthcare law; and healthcare options for different groups of people (i.e., families with children, individuals, people with disabilities, seniors, young adults, and employers). Visit www.HealthCare.gov.
• The United States Department of Labor (DOL). The DOL's Employee Benefits Security Administration (EBSA) regulates health plans offered by most employers and ensures that employees eligible for COBRA get the benefits to which they are entitled. Call (866) 4-USA-DOL for live assistance in English or Spanish. Visit EBSA for more information.
• The Centers for Medicare & Medicaid Services (CMS). CMS manages the Medicare program and works with states on Medicaid programs. Even if you are working, you may be eligible for Medicaid. Visit CMS for more information. https://www.cancercare.org/ Learn more about public health insurance programs.

We’re here to help!  

Call an Blood Cancer United Information Specialist at (800) 955-4572 for guidance about health insurance, government programs, disability benefits, financial assistance programs, and health advocacy.

We also offer financial assistance programs to help individuals with blood cancer. Learn more about our Patient Financial Assistance Programs.