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Many private banking proponents think that by storing your baby’s cord blood stem cells, you are positioning your family with a form of biological insurance in the event that your child or a close family member has a treatable disease.
Tracey Dones of Hicksville, N.Y., paid to bank her son Anthony’s cord blood. But four months after he was born, Anthony was diagnosed with osteopetrosis, a rare disease that causes the body to produce excess bone, leads to blindness, and can be fatal if left untreated.
Eapen M, Horowitz MM, Klein JP, et al. Higher mortality after allogeneic peripheral-blood transplantation compared with bone marrow in children and adolescents: the Histocompatibility and Alternate Stem Cell Source Working Committee of the International Bone Marrow Transplant Registry. J Clin Oncol.2004;22 :4872– 4780
Umbilical cord blood transplants are now used to treat numerous types of immune- and blood-related disorders and genetic diseases. Cord blood (CB) banks play an important role in these transplants by processing and storing CB units. In addition to their therapeutic potential, these banks raise ethical and regulatory questions, especially in emerging markets in the Arab world. In this article, the authors review CB banking in five countries in the region, Jordan, Saudi Arabia, Egypt, Qatar, and the United Arab Emirates, selected for their different CB banking policies and initiatives. In assessing these case studies, the authors present regional trends and issues, including religious perspectives, policies, and demographic risk factors. This research suggests strong incentives for increasing the number of CB units that are collected from and available to Arab populations. In addition, the deficit in knowledge concerning public opinion and awareness in the region should be addressed to ensure educated decision-making.
Extracting stem cells from bone marrow requires surgery under anesthesia; extracting them from the blood requires taking a drug to stimulate their production. And in order to work, these stem cell donations need to come from a person who carries a similar pattern of proteins on the outsides of his or her cells, a molecular calling card known as HLA type. Stem cells found in cord blood don’t need to be as closely matched to work. Because these cells are so flexible, there’s more wiggle room between donor and recipient. That’s particularly good news for people of certain ethnic minorities who often have trouble finding matched stem cell transplant donors.
Rubinstein P, Dobrila L, Rosenfield RE, et al. Processing and cryopreservation of placental/umbilical cord blood for unrelated bone marrow reconstitution. Proc Natl Acad Sci USA. 1995;92 :10119– 10122
Options for Umbilical Cord Blood Banking and Donation—As expectant parents, learn how umbilical cord blood can help others through public donation, family (private) cord blood banking, or directed donation for a biological sibling.
So what are your options? You have three choices. One is to store the cord blood with a private company at a cost to you ranging from $1,500 to $2,500 and an annual storage fee in the ballpark of $125. Secondly, you can donate the cord blood to a public bank, if there is one working with your hospital, and your doctor is on board with the idea. There are also public banks that accept mail-in donations, if you register during your second trimester and your doctor is willing to take a short training class on-line. Zero cost to you. The third option is to do nothing and have the cord blood, umbilical cord, and placenta destroyed as medical waste.
A cord blood industry report by Parent’s Guide to Cord Blood Foundation found that, among developed nations, cord blood banking cost is only 2% of the annual income of those households likely to bank.
2 Cordblood.com, (2014). Cord Blood Stem Cell Banking | Cord Blood Registry | CBR. [online] Available at: http://www.cordblood.com/cord-blood-banking-cost/cord-blood-stem-cells [Accessed 22 March. 2017].
Many public banking proponents believe that the greater good to society is to donate your baby’s cord blood stem cells to a public bank for use by someone who may need it, since the likelihood of your baby needing it is very small.
Families with a history of diseases can store cord blood in a bank. These families can access it should a person get sick with an immune system or blood disease, like leukemia or sickle-cell anemia, later in life.
Wall DA, Carter SL, Kernan NA, et al. Busulfan/melphalan/antithymocyte globulin followed by unrelated donor cord blood transplantation for treatment of infant leukemia and leukemia in young children: the Cord Blood Transplantation study (COBLT) experience. Biol Blood Marrow Transplant.2005;11 :637– 646
Currently, ViaCord has released the most cord blood units for medical transplant and has the highest cord blood transplant survival rate among companies who have disclosed complete transplant data. The one-year survival rate of patients who were treated with ViaCord cord blood units is 88%, and the long-term patient survival rate is 82%.1
FACT accredited: Cord blood companies that are FACT accredited have been evaluated by the Foundation for the Accreditation of Cellular Therapy, and they’re found to have met the foundation’s standards of operation.
There are several cord blood banks that are accredited by the American Association of Blood Banks. Most offer information on cord blood banking and provide private cord blood banking services. With a little research, you should be able to locate a credible cord blood bank online.
Families with a history of diseases can greatly benefit from cord blood banking, as an insurance policy against possible future diseases. However, cord blood banking is expensive, can’t be used to treat everything, and your child may not even need it—at private cord blood banks, most is eventually discarded. Lastly, you should be aware that if the child develops certain genetic diseases, the cord blood will have the same genetic flaws.
A typical cord blood collection only contains enough stem cells to transplant a large child or small adult. This website has a page explaining the optimum transplant dose. At one time it was believed that cell dose limitations restricted the use of cord blood transplants to children. In recent years growing numbers of adults are also receiving cord blood transplants, either by growing the cells in a lab prior to transplant or by transplanting more than one cord blood unit at a time. More information about these trials is available on the web page about Research on Cord Blood Transplants.
After all is said and done, the cost to collect, test, process and store a donated cord blood collection at a public bank is estimated to be $1,200 to $1,500 dollars for each unit banked. That does not include the expense for the regulatory and quality systems needed to maintain licensure, or the cost of collecting units that are discarded because they don’t meet standards.
Although cord blood is currently considered discarded human material, it should only be collected for banking with an institutional review board–approved protocol and with signed informed consent from a parent.42,43 Pertinent donor information communicated to the cord blood bank should be kept confidential by the cord blood bank and used only to report important medical information obtained during the cord blood collection, processing, and screening process that is relevant to the safety of the donor and family. If cord blood was collected from a newborn who subsequently developed a genetic, immunologic, or malignant neoplastic disorder, parents should notify the cord blood bank so that the unit is not used for transplantation. All cord blood units banked for potential use should be tested for infectious diseases, similar to those tested in a blood bank, and for hereditary hematologic diseases. The informed consent must contain information pertaining to what tests are to be performed on the cord blood and how the parents will be informed if test results are abnormal. Pediatricians should be aware that legal cases relating to the duty of a physician to warn parents about the risks of inheriting a genetic disease are new and untested. Pediatricians should remain vigilant, because future cases may define who has a legal duty to notify parents about genetic abnormalities identified during cord blood testing. Informed consent should be obtained before the onset of active labor and before cord blood collection.
Umbilical cord blood stem cells are different from embryonic stem cells. Umbilical cord blood stem cells are collected by your ob-gyn or a nurse from the umbilical cord after you give birth (but before your placenta is delivered). Embryonic stem cells are collected when a human embryo is destroyed.
The policy also points out that if cord clamping is done too soon after birth, the infant may be deprived of a placental blood transfusion, resulting in lower blood volume and increased risk for anemia later in life.
Smith F, Kurtzberg J, Karson E, et al. Umbilical cord blood collection, storage and transplantation: issues and recommendations for expectant parents and patients. Cancer Res Ther Control.1999;10 :217– 226
The cord blood collection process is simple, safe, and painless. The process usually takes no longer than five minutes. Cord blood collection does not interfere with delivery and is possible with both vaginal and cesarean deliveries.
Part of the reason for the dominance of these three companies in terms of the total number of units stored is that they are three of the oldest cord blood banks within the U.S., founded in 1992, 1993, and 1989, respectively. All three of these cord blood banks also support cord blood research and clinical trials.
The FDA regulates cord blood bank operations with strict guidelines. However, additional licenses maybe required in some states. Laboratories should also be AABB accredited. The AABB promotes the highest standards of care for both patients and donors in all aspects of blood banking, transfusion medicine, relationship testing, hematopoietic, cord blood and other cellular therapies.
The evolution from pluripotent stem cells down to blood stem cells is currently poorly understood. The latest indication is that, under the right conditions, stem cells in cord blood can be teased to grow into other types of tissue besides blood. This would open up an entirely new realm of potential treatment through the use of stem cells.
Rocha V, Wagner JE Jr, Sobocinski KA, et al. Graft-versus-host disease in children who have received a cord-blood or bone marrow transplant from an HLA-identical sibling. Eurocord and International Bone Marrow Transplant Registry Working Committee on Alternative Donor and Stem Cell Sources. N Engl J Med.2000;342 :1846– 1854
Cryo-Cell, Viacord, and Cord Blood Registry are three of the oldest and largest private cord blood banks in the United States. They’ve been storing cord blood since the early ’90s, and they’re all accredited by the AABB. Cryo-Cell is located in Oldsmar, Florida; Viacord in Cambridge, Massachusetts; and Cord Blood Registry in San Bruno, California. Each of these banks has its own private labs that test for syphilis, HIV, hepatitis, cytomegalovirus, and human T-cell lymphotrophic virus (considered a precursor to leukemia); the testing is included in their registration fee.
When you consider that public banks can only expect to ship 1-2% of their inventory for transplant, you can quickly understand why most public banks are struggling to make ends meet. That struggle means that fewer collection programs are staffed, and there are fewer opportunities for parents to donate to the public good. We said earlier that public banks only keep cord blood donations over a minimum of 900 million cells, but today most public banks have raised that threshold to 1.5 billion cells. The reason is that the largest units are the ones most likely to be used for transplants that bring income to the bank. Family cord blood banks do not need to impose volume thresholds because they have a profit margin on every unit banked.
Accurate information about the potential benefits and limitations of allogeneic and autologous cord blood banking and transplantation should be provided. Parents should be informed that autologous cord blood would not be used as a stem cell source if the donor developed leukemia later in life. Parents should recognize that there are no scientific data to support the claim that autologous cord blood is a tissue source proven to be of value for regenerative medical purposes. The current standard uses of cord blood transplantation are listed in Table 1.
Information in this guide is general in nature and is intended for informational purposes only; it is not legal, health, investment or tax advice. ConsumerAffairs.com makes no representation as to the accuracy of the information provided and assumes no liability for any damages or loss arising from its use.
Childbirth educators may be one of the first resources that an expectant family turns to in order to gain more knowledge to make an informed decision about collecting umbilical cord blood in the birthing process. Therefore, the childbirth educator should be well versed on the topic, so that as questions from class participants arise, the multiple facets of umbilical cord blood banking can be explored.
Direct-donation umbilical cord blood banks function as an amalgamation of public and private banks. Direct-donation banks collect cord blood without charging fees. In addition, they accept autogenous donations and reserve them only for the family, especially for a family whose infant has a sibling with a disorder that may be treated with umbilical cord blood stem cells (Moise, 2005).
Ballen K., Broxmeyer H. E., McCullough J., Piaciabello W., Rebulla P., Verfaillie C. M., & Wagner J. E. (2001). Current status of cord blood banking and transplantation in the United States and Europe. Biology of Blood and Marrow Transplantation, 7(12), 635–645 [PubMed]
Most stored cord blood is discarded. At public cord blood banks, a unit of stored cord blood has a greater chance of being used to help a sick child or used toward stem cell research. Private cord blood banks, on the other hand, eventually throw away blood that a family no longer wants to store or use.
According to the statement, “Families may be vulnerable to emotional marketing at the time of birth of a child and may look to their physicians for advice. No accurate estimates exist of the likelihood of children to need their own stored cells. The range of available estimates is from 1 in 1,000 to 1 in 200,000.” For this and other reasons, it is difficult to recommend that parents store their children’s cord blood for future use. The AAP policy states:
In a number of genetic, hematologic, immunologic, metabolic, and oncologic disorders, reconstitution of bone marrow (transplantation) can be a potentially life-saving procedure.1–16 Allogeneic (related or unrelated) or autologous (self) bone marrow or peripheral blood stem cells are the usual sources of hematopoietic progenitor cells to achieve this goal. If autologous stem cells are not available or cannot be used, the best option for successful reconstitution therapy is to secure stem cells from an HLA-matched sibling.1,3,11 Close matching confers a higher probability of successful engraftment and minimizes the risk of potentially fatal graft-versus-host disease. Unfortunately, there is only a 25% chance for identifying a full HLA match in a sibling donor.17,18
Only three to five ounces of blood is collected from each umbilical cord. This small amount is enough to treat a sick child, but not an adult, unless multiple units of matched cord blood are used, says William T. Shearer, M.D., Ph.D., professor of Pediatrics and Immunology at Baylor College of Medicine in Houston.
All cord blood banks in the US are required to register with Food and Drug Administration. To ensure safety, cord blood banks must comply with FDA regulations, including current good tissue practice regulations, donor screening and testing for infectious diseases, including HIV I & II (the virus that causes AIDS), Hepatitis B & C, which can cause liver disease, Cytomegalovirus (CMV) a virus that can lead to pneumonia, Human T-cell Lymphotropic Virus (HTLV) 1 & 2, which can suppress the immune system, West Nile Virus, Zika Virus, Treponema pallidum (the bacterium that can cause syphilis) and Variant Creutzfeldt-Jakob Disease (vCJD), a rare virus that can cause brain disease. Since 2011, the FDA has required public cord blood banks to obtain a license under a Biologics License Application.
Barker JN, Weisdorf DJ, DeFor TE, Blazar BR, Miller JS, Wagner JE. Rapid and complete donor chimerism in adult recipients of unrelated donor umbilical cord blood transplantation after reduced-intensity conditioning. Blood.2003;102 :1915– 1919