Family in Need Programs at Cord Blood Banks

Many cord blood banks have charitable programs that offer free or discounted cord blood banking to families that have a medical condition which is eligible for therapy with cord blood. The purpose of this article is to raise parent awareness to inquire about these programs. To qualify as a “family in need”, there must be a documented medical condition in the family that could potentially be treated with cord blood therapy, and that must be verified as part of the program application.

Parent’s Guide to Cord Blood has a web page that summarizes help for families in need, which can be sorted by country. This on-line database is continually updated to include those banks that have charitable programs or have changed the terms of their programs. The services offered by family in need programs vary, so they are categorized by: what conditions are covered, who in the family is eligible, and how the program works.

Typically, charitable programs for families in need are designed to help when an older sibling of the expected baby needs a stem cell transplant, or has been diagnosed with a condition that can be treated by stem cell transplant. One example would be a blood cancer like leukemia. While leukemia is the most common childhood cancer, it is still relatively rare¹.  A more common situation is when an older sibling has an inherited blood disorder, such as Thalassemia Major or Sickle Cell Disease, that can be treated by transplant.  In some countries where a significant fraction of the population are carriers of Thalassemia, the majority of transplants facilitated by the local cord blood banks are for this condition^2,3.

Public cord blood banks do not often run case of need programs, for several  reasons. Even though public cord blood banks are already accepting donations for free, there is no guarantee that donated cord blood units will meet the criteria to be stored. Parents in need may request to have their cord blood donation “directed”, or held in reserve specifically for their child. This requires a public bank to go outside typical regulatory approval, because normally public bank donations are placed into an anonymous storage system. Directed donations are also logistically challenging for public banks because they usually only accept cord blood donations from selected maternity hospitals. Most public banks do not have cord blood collection kits that can be shipped out to parents, nor do they have established methods to monitor the timing and temperature of the return shipment. For all of these reasons, it is much more streamlined for families with special needs to approach family cord blood banks, where there are procedures in place to send the parents a kit, track the return shipment, and direct that the stored cord blood is reserved specifically for that family.

Case of need programs operate under financial limitations. To be realistic, family cord blood banks are for-profit business entities, and these charity programs reduce their profits. This explains why the banks are selective about qualifying circumstances and require medical documentation from a physician. Often, if the cord blood is not transplanted within a certain number of years, parents will have to pay for continued storage.

Only a few family cord blood banks around the world include cerebral palsy or autism in their case of need programs. These diagnoses are ten to a hundred times more prevalent than childhood cancer, so that most banks cannot afford to routinely give away their services for these conditions⁴. Several family banks are running research programs where all children in a partner hospital that are born with a known risk of cerebral palsy (as measured by the newborn Apgar score) will receive free banking. These programs are not advertised because they are limited to select hospitals and the need cannot be anticipated before birth.

Parents who suspect that a condition in their family creates a heightened need for cord blood banking should check the case of medical need programs advertised in their country and discuss the option with their physician. Even if no official program is listed, it is often worthwhile to contact a family cord blood bank that serves your country and explain your situation to the medical director.

References

1. Barrington-Trimis JL, Cockburn M, Metayer C, Gauderman WJ, Wiemels J, McKean-Cowdin R. Trends in childhood leukemia incidence over two decades from 1992 to 2013. Intnl J. Cancer 2017; 140(5):1000-1008.
2. Manipalviratn S, Tiewsiri K, Fongsarun J, Papadopoulos KI. Thailand leads the world in conceiving savior siblings for cord blood transplants to cure Thalassemia. Parent's Guide to Cord Blood Foundation Newsletter Published 2014-11
3. Verter, F. Sibling Transplants for Thalassemia: Family Banks Fulfill a Public Health Need. Parent's Guide to Cord Blood Foundation Newsletter Published 2015-06
4. Parent’s Guide to Cord Blood Foundation. Odds of Use. Last updated 2021-10-08