Newsletter - July 2012
Cord Blood Awareness Month
Giving the Gift of Life
Leukemia is a random killer. It can strike any one of us at any time. But for many, there is hope of a cure through a bone marrow, blood stem cell or umbilical cord blood transplant. That is, of course, if a suitable donor - including cord blood - can be found.
Headquartered in Boca Raton, Florida, Gift of Life is one of the nation's public blood cell registries facilitating transplants for children and adults suffering from leukemia, lymphoma, other cancers and genetic diseases.
Gift of Life evolved out of the high profile grass roots campaign to find a donor match for former New Jersey resident Jay Feinberg in the 1990s. When Jay was diagnosed with leukemia and told he would need a bone marrow transplant to survive, he had no idea that his personal journey would spawn an organization that would save the lives of hundreds of patients in need. But that's precisely what happened.
When he got sick, Jay was told that a transplant could save his life, but he would die needlessly because he would never find a matching donor. He quickly learned the reason why. A patient's best chance of finding a genetic match lies with those of similar ethnic background. Unfortunately, the worldwide registry was not representative of all ethnic groups, and Jay was Jewish. There was an urgent need to add diversity to the registry, and time was of the essence.
Jay's family and friends wanted him to have an equal opportunity to find a match. So they launched an ambitious donor recruitment campaign resulting in the enrollment of tens of thousands of new donors into the worldwide registry. But after four years, and finding matches for many other patients in need, there was still no match for Jay.
That's when his miracle happened. A young man in Chicago decided to run one last drive because his best friend had found a match through a drive held for Jay. He knew the odds were against him, but he was determined to return the gift. And that is exactly what he did.
Jay's four year search for a donor came to a close in May 1995. The very last donor - tested at that very last drive - turned out to be his miracle match! Jay received his transplant shortly after at the world renowned Fred Hutchinson Cancer Research Center in Seattle thanks to his miracle match, Becky, and a determined young man who wouldn't take no for an answer.
Today Gift of Life ranks as the thirteenth largest bone marrow registry in the world. The organization is a member of the international registry Bone Marrow Donors Worldwide and an affiliate donor registry of the National Marrow Donor Program. Gift of Life manages both a donor registry recruiting donors nationwide and a cord blood program enrolling mothers in New York. Its vision has not changed since Jay's search 20 years ago: a match for every patient in need, whenever they may need one. For more information, please visit www.giftoflife.org.
Maternal Health Questionnaire and Eligibility to Donate and Bank Cord Blood
The maternal and family health questionnaires that mothers usually complete before the collection of their baby's cord blood are designed to safeguard the health of the cord blood recipient. These questionnaires are an important component of the health evaluation, along with the testing of the maternal blood sample for infectious disease markers. Maternal blood tests may indicate past exposure, prior illness, or even current illness. The questionnaires cover some of the same conditions, but also many other areas for which testing is impractical or unavailable.
The questionnaire may ask about a past history of hepatitis and HIV, and there may be questions which address potential recent exposure to these conditions. Examples of the latter might include queries about recent tattoos and piercings, contact with individuals with hepatitis, and use of needles. Recent transfusion or a transplant may also be a risk factor for these diseases. Travel history may indicate exposure to malaria, if the trip included regions in which malaria has been identified. In addition, mothers may be questioned about travel to Europe to minimize the risk of variant Creutzfeldt-Jacob Disease (vCJD), more commonly known as "Mad Cow Disease".
Vaccinations may be a cause for deferral, although Rh immune globulin, commonly known by the brand name, RhoGAM ®, is usually acceptable. Use of many of the medications that are acceptable during pregnancy will not preclude acceptance of the donor and use of the cord blood. An exception is typically bovine insulin because of the risk of vCJD. In fact, if a mother has ever taken bovine insulin, or insulin derived from a cow, that is typically a contraindication for donating. However, insulin from other sources used to treat gestational or pre-existing diabetes mellitus is generally acceptable.
The family health questionnaire may be incorporated into the maternal health history or it may be a separate document. It is designed to capture information on not only the birth mother's history, but also that of the birth father and other close relatives. Typically, these questions are generally about inherited conditions which may be passed to the baby and render the cord blood unsuitable for transplantation.
While the forms from different organizations and facilities may appear dissimilar, most cover the same topics. In the United States, the government defines requirements for determining the eligibility of cord blood donors. The questionnaires typically cover the topics in the guidances issued by the United States Food and Drug Administration (FDA) and perhaps those required by other accrediting organizations, such as AABB (formerly known as the American Association of Blood Banks) and FACT (Foundation for the Accreditation of Cellular Therapy), depending on the cord blood bank.
For those parents contemplating private banking, it is important to ask if the questionnaires and testing will enable use of the cord blood for close family members, in addition to the baby, should the stem cells be needed for transplantation. In addition, if there is a chance that the stem cells might be used for transplantation in a country other than the one in which the blood was collected, it may be important to ascertain if alternate questions should be addressed. The use of a cord blood unit for transplant is at the discretion of the transplant physician.
Please remember that these are general guidelines. Check with the cord blood banks that you are considering, either for donation or private banking, if you have specific questions to determine your eligibility according to their requirements.
Matching for the donor's NIMA may improve outcomes in cord blood transplants
One of the advantages of cord blood (CB) as a source of stem cells for transplantation is the ability to use "not perfect" matches, which means that the donor's CB and patient do not have to match at all HLA antigens. As a result, more patients can find suitable CB units.
Our group asked whether, among the various mismatched CB units that a patient may have, could some lead to better outcomes than others? One thing we looked at was the interaction between the mother and baby during pregnancy. To evaluate this question, we retrospectively analyzed 1121 transplants provided by our public CB Bank, the National Cord Blood Program. We also collaborated with researchers from Leiden University in the Netherlands.
We know that the baby inherits one set of HLA types, called a haplotype, from the father, and one set from the mother. These are traditionally named Inherited Paternal Antigens or IPA and inherited Maternal Antigens or IMA. It is also well known that during pregnancy, cells and molecules can cross the placenta, so that there is "communication" between the cells of the mother and the baby: the baby's cells get exposed to the IMA that the baby has inherited from the mother, as well as the Non-Inherited Maternal Antigens or NIMA, which the baby's cells do not "know". The baby's cells "learn" to recognize the NIMA during pregnancy.
After the birth of the baby, an unrelated patient might receive the baby's CB for a transplant. Often the antigens of the patient and donor CB are not an exact match. Does it matter if the patient's antigens that do not match the baby's IPA and IMA, do match the NIMA of the baby's mother? Even though the NIMA are not inherited by the baby, the baby's cells are accustomed to being exposed to them.
Our study found that mismatched CB transplants with NIMA matches had better outcomes, in terms of the time it took blood counts to recover and overall patient survival. Additionally, it seemed that patients with blood cancers who received mismatched CB units with one NIMA match had lower rates of cancer relapse.
Based on these results, we concluded that NIMA-matched transplants may be the best choice for patients among various mismatched CB donors.
Our initial study only had a small number of NIMA matches that happened by chance. We then started exploring ways to include the NIMA when patients search for unrelated CB donors. Bone Marrow Donors Worldwide, an international registry of publicly donated CB, now includes NIMA in their search algorithm. We need to make clear that, in order to evaluate NIMA matches, we need to have the HLA typing of the mother's antigens for all of the CB donations in the registry. Not all public CB banks have recorded this information, but fortunately it has always been part of the standard records at the National Cord Blood Program, which is the world's largest public CB bank.