Editor’s Note: This article originally appeared in the Volume 16, Number 1, Spring 2009 issue of Dignitas, the Center’s quarterly publication. Subscriptions to Dignitas are available to CBHD Members. To learn more about the benefits of becoming a member click here.
Your child may never need it. Stem cell-rich cord blood can be used to treat a range of diseases, but Frances Verter, Ph.D., founder and director of Parent’s Guide to Cord Blood Foundation, estimates that there’s only a 1 in 217 chance that your child will ever need a stem cell transplant with cord blood (or bone marrow). This is particularly true if the child doesn’t have a family history of diseases such as leukemia, lymphoma, or sickle cell anemia. Although the American Academy of Pediatrics (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.
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
An additional cost that is borne only by public banks is the “HLA typing” that is used to match donors and patients for transplants. This is an expensive test, running about $75 to $125 per unit. Family banks always defer this test until it is known whether a family member might use the cord blood for therapy.
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.
Umbilical cord blood can save lives. Cord blood is rich in stem cells that can morph into all sorts of blood cells, which can be used to treat diseases that harm the blood and immune system, such as leukemia and certain cancers, sickle-cell anemia, and some metabolic disorders. There are a few ways for transplant patients to get blood cells (umbilical and placenta, bone marrow, peripheral/circulation), but cord blood is easier to match with patients, and because it is gathered during birth from the umbilical cord, it’s a painless procedure.
Cord blood in public banks is available to unrelated patients who need haematopoietic stem cell transplants. Some banks, such as the NHS bank in the UK, also collect and store umbilical cord blood from children born into families affected by or at risk of a disease for which haematopoietic stem cell transplants may be necessary – either for the child, a sibling or a family member. It is also possible to pay to store cord blood in a private bank for use by your own family only.
The first cord blood banks were private cord blood banks. In fact, Cryo-Cell is the world’s first private cord blood bank. It wasn’t until later that the government realized the need to preserve cord blood for research and public welfare. As a result, 31 states have adopted a law or have a piece of pending legislation that requires or encourages OBGYNs to educate expectant parents about cord blood banking and many states now have publicly held cord blood banks. As a result, parents have the option of banking their baby’s cord blood privately for the exclusive use of the child and the rest of the family or donating the cord blood to a public bank so that it can be used in research or by any patient who is a match and in need.
We are genetically closest to our siblings. That’s because we inherit half of our DNA from our mother and half from our father, so the genes we inherit are based on a chance combination of our parents’. Our siblings are the only other people inheriting the same DNA.
Cord blood contains mesenchymal stem cells but is much more abundant in hematopoietic stem cells. Cord tissue, on the other hand, contains some hematopoietic stem cells but is much richer in mesenchymal stem cells. Cord tissue, or Wharton’s jelly, is the protective layer that covers the umbilical cord’s vein and other vessels. Its MSCs can become a host of cells including those found in the nervous system, sensory organs, circulatory tissues, skin, bone, cartilage, and more. MSCs are currently undergoing clinical trials for sports injuries, heart and kidney disease, ALS, wound healing and autoimmune disease. As with cord blood, cord tissue is easily collected at the type of birth and holds great potential in regenerative medicine. Learn more about cord tissue banking here.
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.
It depends on who you ask. Although commercial cord blood banks often bill their services as “biological insurance” against future diseases, the blood doesn’t often get used. One study says the chance that a child will use their cord blood over their lifetime is between 1 in 400 and 1 in 200,000.
The stored blood can’t always be used, even if the person develops a disease later on, because if the disease was caused by a genetic mutation, it would also be in the stem cells. Current research says the stored blood may only be useful for 15 years.
Generally speaking, public cord blood banks collect, process and store your donated cord blood for free. The cord blood you donate to a public bank may be used for transplants or for research purposes, so you may not be able to access your own cord blood. View a list of public cord blood banks in North America.
Taking time to consider helping another person when you are already busy planning for the birth of your child is greatly appreciated. A gift of cord blood may someday give someone a second chance at life.
In addition, CBR offers Genetic Counselors on staff to help families make informed decisions about newborn stem cell banking. Phone 1-888-CORDBLOOD1-888-CORDBLOOD to speak with a CBR Genetic Counselor.
Once a cord blood donation has been saved, it may be listed on a national registry that can be searched to find a match for a transplant patient. The donation could be released to any recipient who is compatible.
In Europe, Canada, and Australia use of cord blood is regulated as well. In the United Kingdom the NHS Cord Blood Bank was set up in 1996 to collect, process, store and supply cord blood; it is a public cord blood bank and part of the NHS.
There are over 130 public cord blood banks in 35 countries. They are regulated by Governments and adhere to internationally agreed standards regarding safety, sample quality and ethical issues. In the UK, several NHS facilities within the National Blood Service harvest and store altruistically donated umbilical cord blood. Trained staff, working separately from those providing care to the mother and newborn child, collect the cord blood. The mother may consent to donate the blood for research and/or clinical use and the cord blood bank will make the blood available for use as appropriate.
Cord blood (short for umbilical cord blood) is the blood that remains in the umbilical cord and placenta post-delivery. At or near term, there is a maternal–fetal transfer of cells to boost the immune systems of both the mother and baby in preparation for labor. This makes cord blood at the time of delivery a rich source of stem cells and other cells of the immune system. Cord blood banking is the process of collecting the cord blood and extracting and cryogenically freezing its stem cells and other cells of the immune system for potential future medical use.
Remaining in the umbilical cord and placenta is approx. 40–120 milliliters of cord blood. The healthcare provider will extract the cord blood from the umbilical cord at no risk or harm to the baby or mother.
CBR was the first family bank accredited by AABB (formerly the American Association of Blood Banks) and the company’s quality standards have been recognized through ISO 9001:2008 certification—the global business standard for quality. The Federal Drug Administration (FDA) has issued cord blood regulations, and the states of California, Illinois, Maryland, New York and New Jersey have mandatory licensing for cord blood banking. The stringent laboratory processes, record keeping, quality control and quality assurance of CBR are designed to meet all federal and state guidelines and regulations.
Use for Family Siblings gain access to the stem cells, too. They have a one-in-four chance of being a perfect match amd a 39% chance of being a transplant-acceptable match. Parents have a 100 pecent chance of being a partial match. The chances of recovering the donated stem cells for a family memeber is also diminished greatly as described above. Siblings = 75% chance of acceptable match
The University of Texas Health Science Center at Houston is conducting a pioneering FDA-regulated phase I/II clinical trial to compare the safety and effectiveness of two forms of stem cell therapy in children diagnosed with cerebral palsy. The randomized, double-blinded, placebo-controlled study aims to compare the safety and efficacy of an intravenous infusion of autologous cord blood stem cells to bone marrow stem cells.
“This reanalysis supports several previously expressed opinions that autologous [to use one’s OWN cells] banking of cord blood privately as a biological insurance for the treatment of life-threatening diseases in children and young adults is not clinically justified because the chances of ever using it are remote. The absence of published peer-reviewed evidence raises the serious ethical concern of a failure to inform prospective parents about the lack of future benefit for autologous cord banking … Attempts to justify this [commercial cord blood banking] are based on the success of unrelated public domain cord banking and allogeneic [using someone ELSE’S cells] cord blood transplantation, and not on the use of autologous [the person’s OWN cells] cord transplantation, the efficacy of which remains unproven”.
“This is a medical service that has to be done when your baby’s cells arrive and you certainly want them to be handled by good equipment and good technicians,” says Frances Verter, Ph.D., founder and director of Parent’s Guide to Cord Blood Foundation, a nonprofit dedicated to educating parents about cord blood donation and cord blood therapists. “It’s just not going to be cheap.” Although the American Academy of Pediatrics (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 reduce costs.
Not surprisingly, this emotional pitch is working — especially because the seemingly unlimited potential of stem cells has dominated the news in recent years. From 2003 to 2004, for example, the number of couples opting to use a private bank increased by 55 percent to 271,000. The three biggest companies — who have the majority of the approximately $250 million market — are vying for business.
If you do decide to bank your baby’s cord blood, there’s one more thing to keep in mind: It’s best not to make it a last-minute decision. You should coordinate with the bank before your baby is born so nothing is left to chance.
Since the first successful sibling-to-sibling cord-blood stem-cell transplant was performed in 1988 to treat a genetic disorder called Fanconi’s anemia, more than 20 private banks have opened. And they seem to have the address of every expectant couple in America — whose mailboxes bulge with brochures encouraging them to take advantage of this once-in-a-lifetime opportunity. “Cord-blood banking is like insurance to protect your family against unforeseeable events,” says Stephen Grant, cofounder and senior vice president of Cord Blood Registry, a large California-based private bank. “You do it out of love and responsibility for your family. Sure, you hope you’ll never have to use the blood, but if you do, it’ll be there.”
Even if you don’t want to store the cord blood, highly consider donating the cord blood to local public banks. This cord blood can help patients that are on waiting lists with diseases such as leukemia.
Public cord blood banks do not pay the fees associated with transporting the stored cord blood to the necessary medical facility if they are needed for a transplant, so if this is not covered by your insurance, it could be very costly to use stem cells from a public cord blood bank
When it comes to cord blood banking, expectant parents have three options: (1) They can privately store their cord blood for their family, (2) They can take the public option and donate their cord blood for other families, or (3) They can do nothing, at which point the medical facility must dispose of the cord blood as medical waste. At Cryo-Cell International, we believe cord blood should not be discarded. Many states agree with our basic sentiment and have passed laws or guidelines for physicians to use when discussing private and public banking options with expectant parents.
In order to preserve more types and quantity of umbilical cord stem cells and to maximize possible future health options, Cryo-Cell’s umbilical cord tissue service provides expectant families with the opportunity to cryogenically store their newborn’s umbilical cord tissue cells contained within substantially intact cord tissue. Should umbilical cord tissue cells be considered for potential utilization in a future therapeutic application, further laboratory processing may be necessary. Regarding umbilical cord tissue, all private blood banks’ activities for New York State residents are limited to collection, processing, and long-term storage of umbilical cord tissue stem cells. The possession of a New York State license for such collection, processing and long-term storage does not indicate approval or endorsement of possible future uses or future suitability of these cells.
I am currently 38 years old and I would like to have my blood and it’s stem cells harvested via peripheral blood draw to be stored in definitely. Do you offer this service? If so, how can I arrange for my family?
If you’re looking to attain cord blood from a public bank, be aware that matched cord blood, as with bone marrow, can be difficult to obtain through a public cord blood bank. Once a match is ascertained, it may take valuable weeks, even months, to retrieve the match, and the cost of acquiring the cord blood from a public bank can be upwards of $40,000. When the newborn’s umbilical cord blood is banked privately, they can be retrieved quickly, and since the parents own the cord blood, banks can perform the retrieval free of charge. Learn more about public versus private cord blood banking here.
Your baby isn’t the only one who may benefit from having access to preserved newborn stem cells. The cells can potentially be used by siblings and parents, too. In many cord blood treatments, stem cells from a matched family member are preferred.
A major limitation of cord blood transplantation is that the blood obtained from a single umbilical cord does not contain as many haematopoeitic stem cells as a bone marrow donation. Scientists believe this is the main reason that treating adult patients with cord blood is so difficult: adults are larger and need more HSCs than children. A transplant containing too few HSCs may fail or could lead to slow formation of new blood in the body in the early days after transplantation. This serious complication has been partially overcome by transplanting blood from two umbilical cords into larger children and adults. Results of clinical trials into double cord blood transplants (in place of bone marrow transplants) have shown the technique to be very successful. Some researchers have also tried to increase the total number of HSCs obtained from each umbilical cord by collecting additional blood from the placenta.