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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
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
http://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
http://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
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.
National Transplant Assistance Fund
Newtown Square, Pennsylvania
800-642-8399
http://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
http://www.children-cancer.com/pfs/services/index.html
They have a pediatric oncology program that provides limited financial help.
UnitedHealthcare Children's Foundation
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
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:
Government publications on SSI
"You may be able to get SSI . . .
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.
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)
https://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.
Centers for Medicare & Medicaid Services
7500 Security Boulevard, Baltimore MD 21244-1850
(410-786-3000)
http://www.medicare.gov/Prescription/Home.asp
Medicare Prescription Drug Assistance Program. Provides information on programs that offer discounts or free medications to individuals in need.
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.)
RxHope.com
Resource for patient assistance programs offered by federal, state, and charitable organizations.
Partnership for Prescription Assistance
A prescription assistance organization that links you to drug companies that may donate their drugs (even Zofran) if you qualify.
The Cost Containment Research Institute
"The revised seventh edition, 'Free and Low Cost Prescription Drugs' expanded to 48 pages, now includes over one hundred programs and over 1,100 drug listings. The book gives proven tips, tools and tactics on how and where to get free and low cost prescription drugs." (Also refers to Institute Fulfillment Center.)
ScriptSave
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:
Credit Counseling
Consumer Credit Counseling Foundation
(877) 426-6363
http://www.4-creditcounseling.com/
A national, non-profit consumer credit counseling agency that provides 24-hour toll free telephone credit counseling. They provide help with budgets, payments, and debt collection.
Genus Credit Management
(800) 570-3341
http://www.genus.org
GCM is a non-profit credit counseling agency that offers free debt management and educational programs to help financially distressed families.
Patient Advocate Foundation
http://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.orgHelp 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.
Patient Advocacy Coalition, Inc.
850 E. Harvard Avenue, Suite 465
Denver, Colorado 80210 USA
(303) 744-7667 voice/TDD
http://medicalreporter.health.org/tmr0497/PAC.HTM
Helps resolve insurance reimbursement problems.
Patient Advocate Foundation
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
http://www.naic.org/
This is an organization of insurance regulators from the 50 States, the District of Columbia and the four U.S. territories. The NAIC's website links to each State's insurance regulator at http://www.naic.org/state_contacts/sid_websites.htm
Insure Kids Now!
(877) KIDS NOW
http://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 general support page has links to financial assisstance.
Cancer.gov clinical trials and insurance coverage.
Rare Cancer Alliance financial helps page.
Cure Our Children Foundation financial helps page.
Financial assistance for cancer care on the NCI site
Resource lists relevant to financial helps
Links to other lists on this site.
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.
contact webmaster/ped-onc home/last updated 5/09