Resources and information for parents of children with cancer . . . by parents of children with cancer.

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Financial Help and Insurance Issues

Many families of children with cancer experience financial difficulties. Even if the family has full medical insurance coverage, they can spend a large portion of their income on co-payments, travel, motels, meals, and other uncovered items. Families dependent on two incomes or single parent families are likely to experience financial difficulties if a parent must quit their job to care for the child. Numerous resources to help families through financial difficulties are listed below.

Direct Financial Aid

Besides the resources below, check with your social worker at the hospital for local sources of financial aid. Also, many general childhood cancer support organizations offer financial aid; also check the childhood cancer organization list on this site.

Andre Sobel River of Life Foundation

andreriveroflife.org

Within 24 hours, the Andre Sobel River of Life Foundation helps with urgent expenses to allow single parents to stay at their child's bedside during catastrophic illness. [Highly recommended by the parent of a child with leukemia. 2009]

Cancer Fund of America

2901 Breezewood Lane
Knoxville, TN 37921
(800) 578-5284 or (865) 938-5281
www.cfoa.org

Helps defray cancer-related expenses not covered by insurance; a national non-profit organization whose mission is to provide free professional help to people with all cancers through counseling, education, information and referral and direct financial assistance.

Kelly Ann Dolan Memorial Fund

Kelly Anne Dolan Memorial Fund
P.O. Box 556
602 S. Bethlehem Pike, Bldg. D
Ambler, PA 19002
(215) 643-0763
www.kadmf.org/

Dedicated to the nonmedical uninsured needs of families caring for terminally, critically and chronically ill dependent children through advocacy, financial assistance, education and informational resources

The Szott Foundation

www.szottfoundation.org

This foundation offers financial assistance so that one previously full time employed parent can stay home and care for a child with cancer. The initial communication for the application for a grant is initiated by the hospital social worker. See the website for more information, including FAQs.

UnitedHealthcare Children's Foundation (UHCCF)

www.uhccf.org

UHCCF grants provide financial help/assistance for families with children that have medical needs not covered or not fully covered by their commercial health insurance plan. The Foundation aims to fill the gap between what medical services/items a child needs and what their commercial health benefit plan will pay for.

Grant application criteria

Brain Tumor Foundation for Children

www.braintumorkids.org

This foundation provides direct financial aid to families of children and young adults with brain and spinal cord tumors for items not covered by another through their program Butterfly Fund. In 2012, they serve Alabama, Florida, Georgia, Kentucky, Louisiana, Mississippi, South Carolina, and Tennessee, but they plan to expand to other states. Check their web site for details.

National Transplant Assistance Fund

Newtown Square, Pennsylvania
800-642-8399
www.transplantfund.org

NTAF provides fundraising ideas and guidance for patients raising money for uninsured medically related expenses, $1,000 challenge grants for eligible patients and educational information regarding organ/tissue donation.

National Childrens Cancer Society

St. Louis, MO
www.thenccs.org

Direct financial assistance.

UnitedHealthcare Children's Foundation

www.uhccf.org

Provides medical grants to children to cover medical treatment.

Help from your community

Check with the social worker at your hospital for sources of financial assistance in your area. If you cannot pay the hospital bills, your social worker can set an appointment for you with the appropriate person to apply for hospital financial assistance. Service organizations in your area may also help your family, such as the American Legion, Elks Club, Jaycees, Kiwanis Club, Knights of Columbus, Lions, Rotary, United Way, and churches. You can look in your phone book, or ask the local public librarian for a listing in the reference area of the library. Also phone your local Health Department and ask to speak to the social worker for information on local help for families in need.

Government Agencies

Supplemental Security Income, SSI

www.ssa.gov (main social security website)

This is a social security program (USA) for disabled people, including children with cancer. Depending on your family income, you may be eligible for SSI. Phone your local agency by looking for the number of the social security administration under the US government listings. Direct links to pertinent information on pages within this site:

Benefits for children with disabilities

Children's health insurance program

Medicaid

cms.hhs.gov/medicaid/

Medicaid is a jointly-funded, Federal-State health insurance program for certain low-income and needy people. It covers approximately 36 million individuals including children, the aged, blind, and/or disabled, and people who are eligible to receive federally assisted income maintenance payments (like SSI). Rules on eligibility for Medicaid vary from state to state, but you might be eligible if your hospital bills are only partially covered. Medicaid sometimes pays transportation and prescription costs. Phone your local or county service department to find the number for the Medicaid office in your area. For free help with both SSI and Medicaid, FAX the Childhood Cancer Ombudsman Program at (804) 580-2502 or 2304.

Fundraising

Sparrow Clubs USA

www.sparrowclubs.org
906 NE Greenwood Ave. Ste 2
Bend, OR 97701
Office: (541) 312-8630
Fax: (541) 312-8632

Promotes youth compassion by establishing and supporting Sparrow Clubs to help local children in medical crises. Provides a grant for the ill child that local children/schoolmates/friends earn by doing community service or fund raising.

Give Forward

www.giveforward.com

Give Forward is a resource for fundraising to cover out-of-pocket medical expenses. Parents can create a webpage so that friends and family can send financial support. [This sounds like it might be helpful; I have no personal or parent-feedback about the service. PF, 5/11]

Cause Wish

causewish.com

Cause Wish is a resource for fundraising for out-of-pocket expenses. Create a fundraising page to unite well-wishers. [This sounds like it might be helpful; I have no personal or parent-feedback about the service. PF, 8/13]

Kidz Cancer Fund

www.kidzcancerfund.org

A non-profit that raises money for families of children with cancer. In Atlanta, but can help families in other areas. [A new non-profit as of 2011. PF, 7/11]

A Special Way To Care

Organizing a fund raiser for a sick child is a complicated undertaking. Sheila Peterson's book "A Special Way To Care" is a good guide to help people through the process. (The guide is free; write Friends of Karen, Box 217, Croton Falls, NY 10519). **Note: 5/00, this book is reported to be out of print, but you might find a copy at a library.

Drug Reimbursement

Many drug companies have a free drug program if/when chemo drugs are not covered by private or public insurance programs.

Pharmaceutical Research and Manufacturers of America
(now called Partnership for Prescription Assistance)

1-888-4PPA-NOW (1-888-477-2669)
www.pparx.org/Intro.php

Directory of patient assistance programs. Lists companies that provide prescription medicines free of charge to physicians whose patients might not otherwise have access to necessary medicines.

NeedyMeds.com

"NeedyMeds is the place to learn about patient assistance programs and other programs designed to help those who can't afford their medicines. NeedyMeds is not a program. It's an information source." (Taken from their web site 2/2004.)

www.needymeds.com/

RxHope.com

www.rxhope.com/

Resource for patient assistance programs offered by federal, state, and charitable organizations.

Partnership for Prescription Assistance

www.pparxor.org/

A prescription assistance organization that links you to drug companies that may donate their drugs (even Zofran) if you qualify.

ScriptSave

www.scriptsave.com/

A prescription drug saving program: a discount card for numerous participating pharmacies providing savings through membership to individuals without consideration of income.

Compassionate Use

Links to sites for compassionate use of drugs, compassionate access, or expanded access protocols are listed on this ped-onc page:

Compassionate Use

Credit Counseling

Patient Advocate Foundation

www.patientadvocate.org

The Patient Advocate Foundation is a national non-profit organization that serves as an active liaison between the patient and their insurer, employer and/or creditors to resolve insurance, job retention and/or debt crisis matters relative to their diagnosis through case managers, doctors and attorneys. Patient Advocate Foundation seeks to safeguard patients through effective mediation assuring access to care, maintenance of employment and preservation of their financial stability.

Cancer Care, Inc.

1-800-813-HOPE
www.cancercare.org

Help with medical information, one-to-one counseling over the phone, referrals to services in your local area, and definitions of complicated issues and terms. Here is what they say about the help they offer for financial issues: "Costs related to transportation to and from treatment, pain medication, child care, and home care can be overwhelming for patients and loved ones. Whether through a stipend, a referral to a local source of financial assistance, or guidance provided by a financial planning program or workshop, Cancer Care works with patients and families to help ease the burden of these costs."

Insurance Help

It is important to keep records of medical expenses and insurance correspondence, and carefully read your insurance policy.

Also see: Low-cost or free health insurance for kids is here, an article in the Fall 1999 Candlelighters Newsletter (download the pdf).

Patient Advocate Foundation

www.patientadvocate.org

Provides publications, help with insurance problems, referrals to attorneys.

The National Association of Insurance Commissioners (NAIC)

2301 McGee Suite 800
Kansas City, MO 64108-2604
(816) 842-3600
www.naic.org/

This is an organization of insurance regulators from the 50 States, the District of Columbia and the four U.S. territories.

Insure Kids Now!

(877) KIDS NOW
www.insurekidsnow.gov/

The US Dept of Health and Human Services began the Insure Kids Now! Program to link the nation’s uninsured children with free or low-cost health insurance.

Links

Below are links to other web sites that list financial resources.

Cancer.gov financial support page has links to financial assisstance.

Rare Cancer Alliance financial helps page.

Cure Our Children Foundation financial helps page.

Resource lists relevant to financial helps

Links to other lists on this site.

Airline flights

Lodging

Scholarships for survivors of childhood cancer

General Disclaimer

These pages are intended for informational purposes only and are not intended to render medical advice. The information provided on Ped Onc Resource Center should not be used for diagnosing or treating a health problem or a disease. It is not a substitute for professional care. If you suspect your child has a health problem, you should consult your health care provider.

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