Children Diagnosed With Cancer: Financial and Insurance Issues

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To learn more

More information from your American Cancer Society

Here’s more information you might find helpful. You can order free copies of our documents from our toll-free number, 1-800-227-2345, or read them on our website, www.cancer.org.

Coping with childhood cancer

Children Diagnosed With Cancer: Dealing With Diagnosis (also in Spanish)

Children Diagnosed With Cancer: Understanding the Health Care System (also in Spanish)

Children Diagnosed With Cancer: Returning to School

Children Diagnosed With Cancer: Late Effects of Cancer Treatment

Treatment help

Prescription Drug Assistance (also in Spanish)

Clinical Trials: State Laws Regarding Insurance Coverage

Clinical Trials: What You Need to Know (also in Spanish)

Federal laws that can help with family employment and health insurance

What Is COBRA? (also in Spanish)

What Is HIPAA? (also in Spanish)

Family and Medical Leave Act (FMLA) (also in Spanish)

Americans With Disabilities Act: Information for People Facing Cancer (also in Spanish)

The Health Care Law: How It Can Help People With Cancer and Their Families (also in Spanish)

National organizations and websites*

Along with the American Cancer Society, other sources of information and support are listed below. Because there are so many sources, some have their full contact information listed in the text rather than here.

Possible sources of health coverage

Medicaid – US Department of Health and Human Services
Toll-free number: 1-877-696-6775
Website: www.medicaid.gov

    For details on Medicaid coverage and CHIP eligibility. Your state social service or human service agency can give you the best answers to questions about your benefits, eligibility, and fraud. To get contact information for your state go to www.cms.gov/apps/contacts/ or call the number above

Department of Veterans Affairs
Toll-free number: 1-800-827-1000
Website: www.va.gov

    For information on Veteran’s medical benefits and whether your child qualifies for them:
    Toll-free number: 1-800-733-8387
    Website: www.va.gov/healtheligibility

US Department of Health & Human Services
Toll-free number: 1-800-318-2596 (to find your state’s marketplace)
Website: www.healthcare.gov

    Information and sign-up for the health insurance marketplace (open enrollment until March 31, 2014; re-opening in November 2014). Learn about your family’s eligibility for tax credits, subsidies, and other kinds of help with insurance coverage

Getting help with insurance issues

US Department of Health & Human Services
Website: www.healthcare.gov

    For the most current information on health care and insurance laws and how they might affect you and your child

National Association of Insurance Commissioners (NAIC)
Toll-free number: 1-866-470-6242
Website: http://naic.org/state_web_map.htm

    To find your state’s Insurance Commissioner or Department of Insurance

Cancer Legal Resource Center (CLRC)
Toll-free number: 1-866-843-2572 (may need to leave a number for a call back)
Website: www.cancerlegalresourcecenter.org

    Provides free, confidential legal information about laws and resources for many cancer-related issues including health insurance issues, denial of benefits, and government benefits

Patient Advocate Foundation (PAF)
Toll-free number: 1-888-879-4210
Website: www.patientadvocate.org

    Case managers, doctors, and attorneys work with the patient’s parents and their insurers, employers, and/or creditors to resolve insurance, job retention, and/or debt problems related to their child’s diagnosis. Also has co-pay relief programs for some types of cancer, a scholarship fund for young survivors, and educational materials on many cancer-related topics.

Childhood Cancer Ombudsman Program
Toll-free number: 1-877-217-4166 (may need to leave message for return call)
Website: www.childhoodbraintumor.org

    Provides resources to help families better exercise their rights to make decisions about medical treatment, school, rehabilitation, employment, and insurance reimbursement/coverage. This program is offered by the Childhood Brain Tumor Foundation, but services are provided for children and adult survivors of any type cancer.

Your rights at work

US Department of Labor, Employee Benefits, Security Administration (EBSA)
Toll-free number: 1-866-444-3272
Website: www.dol.gov/ebsa

    Has information on employee benefit laws, including COBRA, FMLA, and HIPAA requirements of employer-based health coverage and self-insured health plans. Also has information on recent changes in health care laws. Information for military reservists who must leave their private employer for active duty can be found at: www.dol.gov/elaws/vets/userra/mainmenu.asp

US Equal Employment Opportunity Commission (EEOC)
Toll-free number: 1-800-669-4000
TTY: 1-800-669-6820
Website: www.eeoc.gov

    For information on all federal equal employment opportunity regulations, practices, and policies; publications; how to file charges of workplace discrimination; and how to find EEOC offices in your area

Potential income sources and money management

Social Security Administration
Toll-free number: 1-800-772-1213
TTY: 1-800-325-0778
Website: www.ssa.gov

    For general information, qualification criteria, and details on how to apply for program benefits (such as Supplemental Security Income). Makes referrals to local SSA and Medicare/Medicaid offices

TANF and State Health Departments – US Department of Health and Human Services
Toll-free number: 1-877-696-6775
Website: www.cms.gov/home/medicaid.asp

    Provides contact information for each state’s health department, including Temporary Assistance for Needy Families (TANF), food aid, and Medicaid in your state

National Association of Personal Financial Advisors
Toll-free number: 1-800-366-2732
Website: www.napfa.org

    Offers objective financial advice on a “fee-only” basis (neither the advisor nor any related party gets paid based on the purchase or sale of a financial product). Also has a listing of fee-only planners in the person’s area.

National Foundation for Credit Counseling (NFCC)
Toll-free number: 1-800-388-2227
Toll-free Spanish number: 1-800-682-9832
Website: www.nfcc.org

    For referrals to local Consumer Credit Counseling Services and answers to questions about bankruptcy, credit, and debt collection practices

HelpHOPELive (formerly National Transplant Assistance Fund or NTAF)
Toll-free number: 1-800-642-8399
Website: www.transplantfund.org

    Offers patients’ families and supporters free guidance and support in setting up community fundraisers to help pay for cancer treatment

Internal Revenue Service
Toll-free number: 1-800-829-1040
TTY: 1-800-829-4059
Website: www.irs.gov

    Has answers to tax questions, tax forms, and referrals to free tax help for those who qualify

Childhood cancer information and resources

American Childhood Cancer Organization (ACCO)
Phone number: 855-858-2226
Website: www.acco.org

    Offers information for children and teens with cancer, their siblings, and adults dealing with children with cancer; also offers books and a special kit for children newly diagnosed with cancer, as well as some local support groups

CureSearch National Childhood Cancer Foundation (NCCF)
Toll-free number: 1-800-458-6223
Website: www.curesearch.org

    Provides up-to-date information about childhood cancer from the world’s top pediatric cancer experts. Has online information for patients and families, and a section for friends and the community to help them ease the burden of cancer and show support

National Children’s Cancer Society, Inc. (NCCS)
Toll-free number: 1-800-532-6459
Website: www.children-cancer.org

    Services include an online support network for parents of children with cancer, educational materials, and financial assistance for treatment-related expenses.

St. Jude Children’s Research Hospital
Toll-free number: 1-866-278-5833 (doctor referral number)
Website: www.stjude.org

    Covers all costs of care beyond those that are reimbursed by insurance. Total costs are covered when the child or teen doesn’t have insurance. After an initial evaluation, assistance with transportation and local living expenses may also be provided. Website has information for patients seeking treatment, such as the admission policy, a guide for parents, and directions to the hospital. Patients are accepted by doctor referral only.

Other sources of help

2-1-1 Program Information and Referral Search
Toll-free number: 211
Website: www.211us.org

    May be able to find help and resources in your local area

Other resources*

Cancer Survival Toolbox™ By the National Coalition for Cancer Survivorship. Available at http://canceradvocacy.org/toolbox or by calling 1-877-NCCS-YES (1-800-622-7937).

Mapping the Maze: A Personal Insurance and Financial Guide to Marrow and Cord Blood Transplant. Available from Be The Match at: http://bethematch.org/WorkArea/DownloadAsset.aspx?id=1281.

Surviving Childhood Cancer: A Guide for Families by Margot Joan Fromer. Published by New Harbinger Publications, 1998.

United States Department of Health and Human Services: Families & Children website. Covers many topics, including sources of financial assistance and information on Medicaid and other health insurance. Available at www.hhs.gov/children/.

*Inclusion on this list does not imply endorsement by the American Cancer Society.

No matter who you are, we can help. Contact us anytime, day or night, for information and support. Call us at 1-800-227-2345 or visit www.cancer.org.


Last Medical Review: 01/14/2014
Last Revised: 01/14/2014