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Tracey said she felt lucky since she banked Anthony’s cord blood with a private company. And Osteopetrosis is one of 80 diseases listed by many cord blood companies in their marketing material as treatable with stem cells.
Cord blood donation should be discouraged when cord blood stored in a bank is to be directed for later personal or family use, because most conditions that might be helped by cord blood stem cells already exist in the infant’s cord blood (ie, premalignant changes in stem cells). Physicians should be aware of the unsubstantiated claims of private cord blood banks made to future parents that promise to insure infants or family members against serious illnesses in the future by use of the stem cells contained in cord blood. Although not standard of care, directed cord blood banking should be encouraged when there is knowledge of a full sibling in the family with a medical condition (malignant or genetic) that could potentially benefit from cord blood transplantation.
Specializing in health and medicine, Sandra Gordon has written extensively about cord blood banking for national and regional parenting magazines. She also has written about baby products, including breast pumps, for national and regional parenting magazines, blogs and books. Her work has appeared in hundreds of publications, including Parents, Prevention, Woman’s Day and Self. Gordon also appears on TV as a baby safety and money-saving expert. She is also the author of 10 books and the founder of babyproductsmom.com, a site dedicated to helping new parents gear up safely and within their budget.
Please tell us a little about yourself. A Newborn Stem Cell Educator may call to discuss your options and answer any questions you may have. You may also receive additional information about saving or donating newborn stem cells.
Bunin N, Aplenc R, Iannone R, et al. Unrelated donor bone marrow transplantation for children with severe aplastic anemia: minimal GVHD and durable engraftment with partial T cell depletion. Bone Marrow Transplant.2005;35 :369– 373
Targeted efforts should be made to recruit underserved minorities (black, Hispanic, American Indian/Alaska Native individuals) in public cord blood–banking programs to extend to them potential treatments afforded other segments of society.
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
Right after the cord is clamped and cut, your medical practitioner uses a needle and gets it inserted into the umbilical vein of the cord. Only that part is cut which is still attached to the placenta. High quality and proper needles are used and they do not go anywhere near your baby.
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.
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.
Cord blood can’t be used to treat everything. If your child is born with a genetic condition such as muscular dystrophy or spina bifida, then the stem cells would have that condition, says Dr. Kurtzberg. But if the cord blood donor is healthy and there is a sibling or another immediate family member who has a genetic condition, the cord blood could be a good match for them.
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
Parents have the option to privately store their newborn’s cord blood stem cells. There are now over a dozen private cord blood banks, and more open every year. Some have their own labs, while others contract with a lab. Cord blood stem cell banking is not a regulated industry; there are no certifications or licensing requirements to open a cord blood bank. Several banks are accredited by the American Association of Blood Banks. Please keep in mind there is a big difference between being accredited by the AABB and being a member of the AABB. To be accredited, the lab must follow strict standards and be inspected by the association.
Learning about cord blood banking shouldn’t have to be confusing – or boring. Watch one of our stem cell experts who also happens to be a former RN and Labor & Delivery nurse, talk cord blood banking 101. She answers the questions every parent has about banking cord blood and ViaCord.
Another contributor to cord blood banking costs is the quality of the collection kit. Cheaper banks typically use flimsy collection kits. To insure the survival of newborn stem cells, the shipping container should be thermally insulated to maintain kit temperature during cord blood shipments.
Prior to transplanting any type of tissue, a “matching” process must occur to increase the success of the transplant and decrease the likelihood that the transplant will be rejected. The rejection of a transplanted tissue is called “graft versus host disease.” The matching process dates back to the late 1950s when the human leukocyte antigens were discovered. There are two classes of human leukocyte antigens. The first class is located on the surface of almost all of the cells with a nucleus within the body of the cell. The second class of human leukocyte antigens is located on the surface of immune cells. Each of the two classes of antigens has three subgroups, creating six antigens for which matching can occur. Thus, a “6 of 6” matching of the antigens represents a “perfect” match. Beyond the matching process, other factors contribute to the success or failure of a stem cell transplant. These factors include, but are not limited to, the age of both the donor and the patient, the type of disease being treated, and the number of stem cells being transplanted (Moise, 2005).
Parents often complain about cord blood banking costs. This is not an industry where costs can be cut by running a turn-key operation. Each cord blood unit must be individually tested and processed by trained technicians working in a medical laboratory.
Transplant science is constantly improving. Several companies are bringing to market methods of “expanding” the stem cell population in the laboratory, and these methods are starting to be applied in clinical trials.
Because there are no scientific data at the present time to support autologous cord blood banking and given the difficulty of making an accurate estimate of the need for autologous transplantation and the ready availability of allogeneic transplantation, private storage of cord blood as “biological insurance” should be discouraged. Cord blood banks should comply with national accreditation standards developed by the Foundation for the Accreditation of Cellular Therapy (FACT), the US Food and Drug Administration (FDA), the Federal Trade Commission, and similar state agencies. At a minimum, physicians involved in procurement of cord blood should be aware of cord blood collection, processing, and storage procedures as shown in Table 2.
Cord blood–banking recruitment practices should be developed with an awareness of the possible emotional vulnerability of pregnant women and their families and friends. Efforts should be made to minimize the effect of this vulnerability on cord blood–banking decisions.
ViaCord’s Sibling Connection Program, a dedicated transplant program for siblings, was designed to help families in need of a stem cell transplant. This program provides ViaCord’s cord blood banking services at no cost to expecting parents. A family with a child with an established diagnosis of a disease that is currently treatable with sibling cord blood may be eligible.
CBR’s lab stores over 700,000 cord blood and cord tissue stem cell units. As a result of our size, we are able to continuously invest in clinical trials, product innovation, and our lab and storage facility. We own our state-of-the-art facility. And, we continually invest in quality and security. This means our families will always have access to their stem cells.
Since 1988, cord blood transplants have been used to treat over 80 diseases in hospitals around the world. Inherited blood disorders such as sickle cell disease and thalassemia can be cured by cord blood transplant. Over the past decade, clinical trials have been developing cord blood therapies for conditions that affect brain development in early childhood, such as cerebral palsy and autism.
When researching cord blood banks, make sure they’re registered with the Food and Drug Administration (FDA), and comply with FDA regulations including current good tissue practice regulations, donor screening and testing for infectious diseases. Check for accreditations with American Association of Blood Banks or the Foundation for the Accreditation of Cellular Therapy. Other factors to consider are the bank’s shipping and delivery methods, clinical experience, processing options, payments and costs.
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.
Accreditation agencies and registries have recognized StemCyte™ for its dedication to higher standards and patient care. StemCyte™ is the only private cord blood bank that is both FACT- and AABB-accredited.
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.
To save money, public banks will not even process a cord blood donation unless they know in advance that they are going to keep it. When the collection first arrives at the lab, it is passed through a cell counting machine. Only collections that have at least 900 million nucleated cells are kept. As a result, over 60%-80% of cord blood donations are discarded. The public bank must absorb the expense of the collection kit and delivery charges for discarded blood; typically $100 per unit.
One of the first things I learned is that the couples in my childbirth class were not unique. In fact, research indicates that most pregnant women are underinformed about the issue of cord blood banking (Fox et al., 2007). While reviewing the literature on cord blood banking, I also found that the information available for nurses and childbirth educators often comes from private cord blood banks or their employees (Cord Blood Registry, 2009; Wolf, 1998, 1999), thus introducing the chance of bias.
In 1988, a 5-year-old named Matthew with a rare type of anemia received umbilical cord blood cells from his newborn sister, who didn’t have the disease. That transfer, called an umbilical cord blood transplant, worked, and the boy was soon free of the disease.
Umbilical cord blood was once thought of as a waste product of the birthing experience, but now it is valued for its content of stem cells. Today, more than 20 years after the first successful umbilical cord blood stem cell transplant, more families are seeking information about whether or not to invest in saving their newborn’s umbilical cord blood. Saving the cord blood in public banks is a worthy undertaking for any family. It is recommended that expectant families only consider cord blood banking in private banks when they have a relative with a known disorder that is already treatable by stem cell transplants. Moreover, expectant families should not rely on commercial cord blood banks as their sole source of information about cord blood banking.
Thornley I., Eapen M., Sung L., Lee S., Davies S., & Joffe S. (2009). Private cord blood banking: Experiences and views of pediatric hematopoietic cell transplantation physicians. Pediatrics, 123(3), 1011–1017 [PMC free article] [PubMed]
Private cord blood banking can benefit those with a strong family history of certain diseases that harm the blood and immune system, such as leukemia and some cancers, sickle-cell anemia, and some metabolic disorders. Parents who already have a child (in a household with biological siblings) who is sick with one of these diseases have the greatest chance of finding a match with their baby’s cord blood. Parents who have a family history of autism, Alzheimer’s, and type 1 diabetes can benefit from cord blood. Although these diseases aren’t currently treated with umbilical cord steam cells, researchers are exploring ways to treat them (and many more) with cord blood.
“Processing” refers to separating the important components of the whole cord blood before cryopreservation. There are many methods used to process cord blood that can achieve the same goal: storing the important cells for potential future use. However, it’s important to point out some differences between methods:
With umbilical cord blood harvesting, the harvested cord blood does not come from the newborn baby itself; instead, the cord blood is harvested from the blood that remains in the umbilical cord after birth. Umbilical cord blood is never harvested from either mother or child, but only from the unused blood in the umbilical cord, which would otherwise be discarded waste. The harvesting procedure takes only a few minutes and there is zero danger to either the parent or the baby.
Basing your decision solely on the price of service may actually cost you in the long run. This is why we look at the quality of cord blood services provided and the costs of maintaining state of the art facilities.
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
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.
Publicly banking your baby’s cord blood is a wonderful gift. Unfortunately, however, your chance of donating your baby’s cord blood is very low due to the regional and financial constraints of public cord blood banks. It is estimated that cord blood from less than 3% of all U.S. births can be collected and stored by the public banks. We support any efforts to increase the resources available for public banking.
‡ Payment Plan Disclosures for in-house CBR 6-Month Plan (interest free) – No credit check required. The 6-month plan requires a $10/month administrative fee. The plans may be prepaid in full at any time.
Therapies with cord blood have gotten more successful. “The outcomes of cord blood transplants have improved over the past 10 years because researchers and clinicians have learned more about dosing cord blood, picking better matches, and giving the patient better supportive care as they go through the transplant,” says Joanne Kurtzberg, M.D., director of the pediatric bone marrow and stem cell transplant program at Duke University.
A well-established history. Public banks are affiliated with nonprofit research institutions or hospitals, so they have a better chance of being managed more soundly. For families without a history of diseases treated by cord blood, such as leukemia and sickle cell anemia, the American Academy of Pediatrics (AAP) recommends that cord blood be donated to public banks. Although the AAP states cord blood has been used to treat certain diseases successfully, there isn’t strong evidence to support cord blood banking. If a family does choose to bank cord blood, the AAP recommends public cord blood banking (instead of private) to cut down on expenditures. Private cord blood banks are affiliated with business corporations, so, like any business, they may go under, says William T. Shearer, M.D., Ph.D., professor of Pediatrics and Immunology at Baylor College of Medicine in Houston.