Posted by Lilly from ? (188.8.131.52) on Tuesday, September 24, 2002 at 11:46AM :
In Reply to: OK, so I like Joe posted by Lilly from ? (184.108.40.206) on Tuesday, September 24, 2002 at 10:55AM :
I'm typing this from the book "Childhood Leukemia: A Guide for Families, Friends, & Caregivers" by Nancy Keene. One can find this book in any library. We need team work with other people in the hospital. Has anyone gone to see a Childlife expert at the hospital she's currently in? Has a social worker been assigned for Lina? We should not be afraid to ask about finances, no matter what her status is. We should be able to negotiate prices & push to get what we want. Think of it as similar to buying a car, only w/ more serious consequences - Lina & her family are the customers. The hospital is there to make her better.
Our leaders should have genuine friends in the medical community & be doing meaningful things for those friends so that they get the same in return - networking.
Sources of financial assistance
Sources of financial assistance vary from state to state and town to town. To begin to track down possible sources, ask the hospital social worker for assistance. In addition, some hospitals have community outreach nurses or case workers who may point out potential sources of assistance.
If you find yourself unable to pay your hospital bills, don't sell your house or let your account go to collections. Ask the social worker to set up an appointment for you with the appropriate person to discuss the hospital policy on financial assistance. Many hospitals write off a percentage of the cost of care if the patient is uninsured or underinsured.
Free medicine programs
Many drug companies have programs to provide free medicines (including chemotherapy) to needy patients. Eligibility requirements vary, but most are available to those not covered by private or public insurance programs. Ask your physician to request, on letterhead, a free copy of the Directory of Pharmaceutical Indigent Programs from:
Pharmaceutical Manufacturers Association
1100 15th St. NW
Washington DC 20005
Toll free hotline for physicians: 1-800-PMA-INFO
There are numerous service organizations that can help families in need. They provide all kinds of aid: transportation, wigs, special wheelchairs, and food. Often, all a family has to do is describe their plight, and good Samaritans appear. Some organizations that may exist in your community are American Legion; Elks Club; fraternal organizations such as the Masons, Jaycees, Kiwanis Club, Knights of Columbus, Lions, Rotary; United Way; Veterans of Foreign Wars; & churches of all denominations. In addition, local philanthropic organizations exist in many communities. To locate them, call your local Health Department, speak to the social worker, and ask for help.
Organized fund raising
Many communities rally around a child with cancer by organizing a fund. Help is given in various ways, ranging from mason jars in local stores to an organized drive using all of the local media. There are many pitfalls to avoid in fund raising, and great care must be exercised to protect the privacy of the sick child as much as possible. If you are contemplating starting a fund, read Sheila Peterson's "A Special Way to Care." This guide gives detailed, step-by-step advice on determining the needs of the family, finding benefits, using publicity, generating community support, and managing the funds.
The Sparrow Foundation
1155 N. 130th Suite 310
Seattle WA 98104
This nonprofit charitable and educational organization was started by the family of a child who needed a bone marrow transplant, for which their insurance carrier refused to pay (described in the book "One Small Sparrow"). The foundation provides seed money to schools, youth organizations, service clubs, and churches which help persons with medical needs.
Steven Greenwood Childhood Cancer Foundation
1555 Wilson Blvd., Suite 300
Arlington, VA 22209
Provides financial aid for non-medical expenses of patients diagnosed with cancer prior to age twenty-one.
Cancer Fund of America
2901 Breezewood Lane
Knoxville, TN 37921
FAX: (615) 938-2968
Helps defray cancer-related expenses not covered by insurance.
The Leukemia Society of America
This organization can provide up to $750 worth of assistance.
Paying for the transplant
Bone marrow transplants are expensive, averaging from $200,000-$300,000 for the transplant, hospitalizatino, and follow-up care. Fees for the donor search, donor blood tests, donor physical exam, and bone marrow harvest can total more than $30,000.... If you are not insured (or underinsured) and must raise all or part of the necessary funds, contact the "Organizations for financial assistance" listed at the end of this chapter. They may be able to offer some financial help, and can supply advice on how to quickly and effectively raise funds. Before working with any of these organizations, ask for all printed information available, and ask questions about any fees or costs associated with their services. Make sure that when the treatment is completed or the child dies, any remaining funds may be applied to outstanding medical debts.
Organizations for financial assistance
In addition to those below, there are many state and regional organizations which provide emotional and financial assistance to families of a child undergoing a bone marrow transplant. Appendix B of the "Candlelighters Guide to Bone Marrow Transplants in Children" lists many such organizations. You could also call Candlelighters at 1-800-366-CCCF to obtain an up-to-date listing.
Children's Organ Transplant Association
2501 Cota Drive
Bloomington, IN 47403
Offers guidance and assistance in all aspects of fund-raising for those who need to raise money for transplants. A COTA staff member will travel to the site of the campaign, help the campaign obtain 501(c)(3) status, provide a toll-free number, and advise on all aspects of fund-raising. Emergency funds available.
National Children's Cancer Society
1015 Locust St. Suite 1040
St. Louis, MO 63101
(314) 241-1600 or 1-800-5-FAMILY
FAX (314) 241-6949
NCCS offers a multifaceted outreach program, which includes financial assistance, education, information, and emotional support. They provide financial assistance for bone marrow transplantation, donor harvest, donor search, donor recruitment, and family emergency expenses (such as travel, hotel, food). They also have an active advocacy program to help families with insurance companies, hospitals, Medicaid, the National Marrow Donor Program, and the American Registry.
Organ Transplant Fund
1027 South Yates Rd.
Memphis, TN 38119
1-800-489-3863 or (901) 684-1697
Gives financial assistance for transplants as well as helps patients who need a bone marrow transplant organize fund-raisers. If maintains accounts to which tax-deductible contributions can be made and has a support program that provides practical help with arrangements and advocacy.
The Barbara DeBoer Foundation
2069 S. Busse Road
Mount Prospect, IL 60056
Helps identify and utilize resources in your community to raise necessary funds for transplants.
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