Arizona has state legislation around cord blood education that follows the Institute of Medicine guidelines and mandates/encourages physicians to educate expectant parents about ALL forms of cord blood banking. The Arizona bill was enacted 26 Jan. 2006 and became 1 Jan. 2007.
- What questions should parents ask a Family Bank about the Storage Facility?
- What type of records do parents receive after storage?
- Does your contract state that the storage fee is fixed, or may it increase later?
- Does the bank reserve the right, in your contract, to change storage facilities?
- Does the bank operate their own storage facility, or is it provided by another laboratory?
- What type of accreditation or other certifications does the storage facility carry? In most banks the cord blood is stored in the lab where it was processed, and the accreditation of the lab covers the storage conditions.
- What is the geographic location of the storage facility: Is it at risk for hurricanes, earthquakes, or other natural disasters?
- What type of back-up systems does the storage facility have in case of power failure?
- What type of security systems does the storage facility have?
- If I donate my baby's cord blood, will that child have free access to cord blood for a transplant?
- No. When a mother signs the Informed Consent to donate cord blood, she gives up any guaranteed access to that blood. The blood may not be banked, and if it is banked, it may be released to some one else. There have been cases where families needed their child's cord blood and got it back from a public bank, but it is important to realize there are no guarantees of access to donated cord blood. Cord blood donors also do not receive guarantees of priority treatment or waived fees if your child later needs a donor. The reward for donating cord blood is the possibility that your baby may Be The Match that saves a life.
- Are related donors better for transplants?
The overall answer is yes, but this is a complex topic.
The two important measures of patient outcome are: long-term survival, and the impact on quality of life from graft-versus-host disease (GvHD). Sibling donors tend to trigger less GvHD. Also, sibling donors are available faster than searching for an unrelated donor, and patients have better survival when they go to transplant faster after diagnosis.
The exact comparison of outcome between sibling or unrelated donor varies with the patient diagnosis. The NMDP website has a page on this, with numerous references. For many cancers the outcomes are comparable, although sibling donors have a slight edge. The largest study was by Weisdorf et al. 2002, for over 2900 patients with CML leukemia. When correcting for all other factors, the survival with sibling donor vs unrelated donor was 68% vs. 61%. Sibling donors show a significant improvement for pediatric cord blood transplants of hereditary disorders. The European Blood and Marrow Transplantation Group (EBMT) reported 3 year survival rates of 95% from a sibling donor vs. 61% from an unrelated donor.
Weisdorf, D.J. et al. Blood 2002; 99:1971-1977.
Bizzetto, R. et al. (EBMT) Haematologica 2011; 96(01):134-141