A "case of medical need" is usually taken to mean that a person in the family has been diagnosed with one of the diseases for which stem cell transplantation is standard therapy. The cord blood from the baby may be a close enough match to provide a stem cell transplant to a full sibling or a birth parent.
In the past, there was a US federal grant that helped selected banks to provide free cord blood banking to families in this situation. As of Oct. 1, 2011, there is no underlying funding program supporting "Related Donor" banking, but individual banks are continuing to offer the service as they can afford to do so. Under these circumstances, the coverage decisions are at the discretion of the individual banks: the banks can decide which diagnoses they will cover, which clinical trials (if any) they will cover, and which relatives they will cover. Families who need such a program should be prepared to make several inquiries and to provide documentation from their treating physician.
Below are lists of contact information for public and private/family cord blood banks that offer free cord blood banking to families with a case of medical need.
The Public Cord Blood Banks listed below offer "Sibling Directed Donation Programs". If a full biological sibling of the baby has an eligible diagnosis, the family will receive free cord blood banking. (Some, but not all, of the public banks will also cover a parent with a case of need: families with that situation may need to go to the next section and make inquiries with the charity programs of family banks.)
These programs are called "directed donation" programs because the baby's cord blood is ear-marked for the patient in need, whereas public donations are normally stored anonymously. When/if the patient is transplanted, the family's health insurance company will be charged to reimburse the bank for the cost of the processing and storage.
In general, families are definitely eligible for these programs if they have an older child who has: cancer, a life-threatening inherited blood or immune system disorder, sickle cell anemia, or thalassemia. However, other diagnoses may be considered. The sibling must have the same biological parents as the baby. Parents should enroll for this program as soon as possible in the pregnancy.
Families accepted for Sibling Directed Donation receive:For more information about Sibling Directed Donation Programs at public banks in the USA's NMDP network, contact the National Marrow Donor Program Office of Patient Advocacy: E-mail patientinfo@nmdp.org or phone 888-999-6743, Monday - Friday, 8 AM - 5 PM CST.
Several family banks offer charity programs to families with a case of medical need. The family banks are more flexible than the public banks in their definition of eligible situations. Since these programs could change at any time, the burden is upon parents to make inquiries and compare their options. As of October 2011, the following banks are operating the charity programs described below.
AlphaCord is pleased to announce its Outreach Program. Qualified recipients will receive free cord blood banking and storage for the first year. AlphaCord wants to be able to help those who have a qualified medical need for the cord blood and documented financial needs. To learn more please contact AlphaCord 1-866-396-7283.
Americord Registry is offering to reimburse families the cost of cord blood processing and storage if their baby has Cerebral Palsy or a similar acquired neurological condition, and the baby will receive its own cord blood as treatment in a clinical trial. To learn more please contact Americord Registry 1-866-503-6005.
CBR’s Newborn Possibilities Progam provides free access to genetically related donor stem cells to those families who qualify for the Designated Treatment Protocol. Over 3,500 patients have participated in our Newborn Possibilities Program, which offers free collection, processing, and five years of storage. You may be eligible for our Newborn Possibilities Program if a family member (full sibling or biological parent – a first-degree relative to the newborn) has been diagnosed with a life-threatening disease currently treatable with a donor stem cell transplant, has an oncologist or attending physician who agrees stem cells may be used for treatment, lives in the U.S., and has an active disease or is in recent remission. For more information, contact CBR at 1-888-932-6568.
FamilyCord started the Immediate Need Transplant Program to offer their services free of charge to parents with a family member in immediate need of a cord blood transplant to treat a life-threatening disease. Any expectant family with a mother, father or child that has been diagnosed with a disease presently treatable by cord blood stem cells qualifies for this program. Please contact FamilyCord at 800-490-CORD (2673) to discuss your individual case with a cord blood educator.
The Wings of Hope Medical Need Program was established to offer compassionate support to Canadian families who might potentially require a stem cell transplant in an immediate family member within the year following an expected baby’s birth. Approval has been on a case by case basis, conditional on the recommendation of the treating oncologist/haematologist that the cord blood unit might be required for transplant within one year of the birth of the donating newborn. For more information contact us 866-606-2790.
As a public service, the Xytex Cord Trust Program will provide cord blood banking services and up to 10 years of storage, free of charge, to families that either: have a child diagnosed with a disease where cord blood stem cells are a standard treatment, or an ultrasound abnormality in utero resulting in a diagnosis where cord blood stem cells are a standard treatment. The program covers treatment of first or second degree relatives of the baby. For more information, call Xytex at 800-277-3210 and ask for the Cord Trust Program.
