Cord Blood

Welcome to our mini website entitled Cord Blood. This mini website serves as a source of information for any parent who is considering collecting and saving their babies cord blood. Here we also provide a book store which consists of a small but useful selection of books about cord blood and stem cell transplantation. Here we also provide the most current news about cord blood banking, a list of private cord blood banks in the United States, and a chat room about cord blood banking and related topics.

What is cord blood and why would the general public be interested in cord blood? Cord blood is the blood that remains in the babies umbilical cord at birth. In the old days, this umbilical cord, along with the cord blood, would always be discarded. But today, the parents of the baby have the option at birth, of saving this blood. Why would you want to save this blood?

You would want to save your babies cord blood simply because it contains your babies stem cells. But why would you want to save your babies stem cells? Here we will examine this question. But first lets begin by developing an understanding of what stem cells are, and why at some point in your life, you may need your own stem cells.

Stem cells reside within your bone morrow and they differentiate into many different types of cells. Stem cells are the body’s “master” cells because they give rise to all tissues, organs, and systems in the body, including the cells of the immune system.

Lets look at one example as to why in the future, you may need your own stem cells. One of the main stream treatments of cancer is Chemotherapy. Chemotherapy has been used to treat cancer for many years. Chemotherapy kills off the most rapidly proliferating cells. One of those most rapidly proliferating cells is stem cells. So a patient which has had years of chemotherapy, is left with fewer stem cells, and a weakened immune system. Normally the immune system cells are continually replenished with cells which developed from stem cells. Wouldn’t it be nice if the cancer patient could receive a new immune system so that their own immune system could fight the cancer. Well this is exactly what happens when the cancer patient receives a stem cell transplant. They are essentially receiving a new immune system.

If your baby later on in life develops a disease such as cancer, there is the possibility that those stem cells that you saved may save your childs life. Cancer is just one example. Currently, there are 70 diseases that can be treated with stem cells. The probability of these treatments having a good outcome increases when the stem cells which are donated, are the patients own stem cells. This is why you would want to save the stem cells within your babies cord blood. Your baby later on in life may need his/her own stem cells.

The following are current diseases which can be treated with stem cell transplant.

Diseases That are Treated With Stem Cell Transplant

Bone Marrow Failure Disorders Amegakaryocytosis Aplastic Anemia (Severe) Blackfan-Diamond Anemia Congenital Cytopenia* Congenital Dyserythropoietic Anemia Dyskeratosis Congenita Fanconi Anemia Paroxysmal Nocturnal Hemoglobinuria (PNH) Pure Red Cell Aplasia Hemoblobinopathies Beta Thalassemia Major Sickle Cell Disease Histiocytic Disorders Familial Erythrophagocytic Lymphohistiocytosis Hemophagocytosis Langerhans’ Cell Histiocytosis (Histiocytosis X)

Inherited Immune System Disorders Chronic Granulomatous Disease Congenital Neutropenia Leukocyte Adhesion Deficiency Severe Combined Immunodeficiencies (SCID) including: Adenosine Deaminase Deficiency* Bare Lymphocyte Syndrome Chediak-Higashi Syndrome* Kostmann Syndrome Omenn Syndrome Purine Nucleoside Phosphorylase Deficiency Reticular Dysgenesis Wiskott-Aldrich Syndrome X-Linked Lymphoproliferative Disorder Inherited Metabolic Disorders Adrenoleukodystrophy Fucosidosis Gaucher Disease* Hunter Syndrome (MPS-II) Hurler Syndrome (MPS-IH) Krabbe Disease Lesch-Nyhan Syndrome Mannosidosis* Maroteaux-Lamy Syndrome (MPS-VI) Metachromatic Leukodystrophy Mucolipidosis II (I-cell Disease)* Neuronal Ceroid Lipofuscinosis (Batten Disease)* Niemann-Pick Disease* Sandhoff Disease* Sanfilippo Syndrome (MPS-III) Scheie Syndrome (MPS-IS) Sly Syndrome Tay Sachs* Wolman Disease

Leukemias and Lymphomas Acute Biphenotypic Leukemia* Acute Lymphocytic Leukemia (ALL) Acute Myelogenous Leukemia (AML) Acute Undifferentiated Leukemia* Adult T Cell Leukemia/Lymphoma Chronic Lymphocytic Leukemia (CLL) Chronic Myelogenous Leukemia (CML) Hodgkin’s Lymphoma Juvenile Chronic Myelogenous Leukemia (JCML) Juvenile Myelomonocytic Leukemia (JMML) Myeloid/Natural Killer (NK) Cell Precursor Acute Leukemia Non-Hodgkin’s Lymphoma Polymphocytic Leukemia Myelodysplastic/Myeloproliferative Disorders Acute Myelofibrosis* Agnogenic Myeloid Metaplasia (Myelofibrosis)* Amyloidosis Chronic Myelomonocytic Leukemia (CMML) Essential Thrombocythemia* Polycythemia Vera* Refractory Anemias (RA) including: Refractory Anemia with Excess Blasts (RAEB) Refractory Anemia with Excess Blasts in Transformation (RAEB-T) Refractory Anemia with Ringed Sideroblasts (RARS)

Plasma Cell Disorders Multiple Myeloma Plasma Cell Leukemia Waldenstrom’s Macroglobulinemia Other Inherited Disorders Cartilage-Hair Hypoplasia Congenital Erythropoietic Porphyria (Gunther Disease) DiGeorge Syndrome Osteopetrosis Other Malignancies Brain Tumors** Ewing Sarcoma* Neuroblastoma Ovarian Cancer** Renal Cell Carcinoma** Rhabdomyosarcoma Small Cell Lung Cancer** Testicular Cancer** Thymoma (Thymic Carcinoma) Other Chronic Active Epstein Barr Evans Syndrome Multiple Sclerosis** Rhuematoid Arthritis** Systemic Lupus Erythematosus** Thymic Dysplasia

*Refer to ClinicalTrials.govfor additional information.
**Not routinely eligible for participation in Cord Blood Registry Designated Transplant Program
Source: Medical literature and ClinicalTrials.gov
Information provided by Cord Blood Registry

Although currently 70 diseases can be treated with stem cells, undoubtedly that number will increase over time. And if your baby which is born today develops a disease 50 or 60 years from know, there is an even greater probability that disease can be treated with stem cell donation. Having your own stem cells increases the probability of a favorable outcome when treated. But then why can you not just collect your own stem cells at the time when you need them?

Lets look at non-Hodgkin’s lymphoma as an example. In non-Hodgkin’s lymphoma (NHL) one of the last lines of defense against the cancer is stem cell transplant. But the NHL patient can not use their own stem cells because in most cases, the patient has had years of chemotherapy. Because chemotherapy kills off the most rapidly proliferating cells, stem cells, which are rapidly proliferating, can also be killed off. Because the patients immune system comes from their natural stem cells, eventually over time the patients immune system capability decreases. The patient has fewer stem cells to harvest, and therefore can not use his/her own stem cells for transplant.

Another way of looking at it is the NHL patient’s stem cells have been battle worn from all the chemotherapy received. In any case, the NHL patient needs a good match donor of stem cells. When the NHL patient receives donor stem cells, these stem cells migrate to the patients bone marrow, and will develop into a new immune system for the patient. The patient essentially receives a new immune system from the donor.

If the patient does not receive a good match in terms of stem cell donation, the patient will experience what is called graft verses host disease (GVH). The donor stem cells will recognize the patients own cells as foreign. If the patient uses his/her own stem cells, the stem cells will recognize the patients cells as being normal. If the patient receives stem cells which are not their own, the probability of GVH increases. A person can die from GVH, if it is severe. So as you can see, you will have a better probability of a favorable outcome from stem cell transplant if you use your own stem cells.

There is a lot more that can be said from a medical perspective in terms of the advantages to using your own stem cells for donation. A further discussion on the biological advantages is outside the purview of this website. The point here is that if you develop a disease which can be treated with stem cell transplantation, you can definitely benefit from having your own stem cells available. What if you end up not needing your own stem cells? What if a family member develops a disease which requires stem cell transplantation to treat?

Later on after your baby grows up, there is a probability that one of the sisters or brothers of that baby may develop a disease which requires a stem cell transplant. There is a greater probability that the stem cell transplant will work when a donor comes from a brother or sister. So even though your baby may never need his/her own stem cells, there is a probability that the babies brothers or sisters may need them. This is another reason why it is wise to have the babies cord blood stem cells collected and saved.

So to summarize, lets look at the relative probabilities of a successful outcome from stem cell transplant, when looking at the type of donor:

• Donor stem cells come from yourself:
  Highest probability of successful outcome
• Donor stem cells come from a brother or sister, assuming a good match:
  Next highest probability of a successful outcome.
• Donor stem cells come from a unrelated donor:
  Greater probability of GVH, and lower probability of a successful outcome. This is not to say that you can not have a successful outcome from this type of donor. In many cases, a perfect match is found where the donor is unrelated and there is a successful outcome.

The point here is that you are much better off using your own stem cells for a stem cell transplant if at all possible. Parents who have the foresight of saving their babies stem cells at birth, may some day save that childs life later on.

There are two options that parents have in terms of cord blood collection and storage:

1) The parents can store the cord blood of their baby for possible future need by the baby or possible need by the babies brothers and sisters, at a private cord blood bank, which costs money. Private cord blood banks are for-profit organizations that store cord blood for the exclusive use of the donor or donor’s relatives.

2) The parents can have the cord blood stored at a public cord bank, which does not cost money, but the cord blood becomes available for any patient who needs it. Most U.S.public cord banks coordinate matching cord blood to patients through the National Marrow Donor Program (NMDP).

To summarize, there are three solid reasons as to why you should collect and save your babies cord blood.

• Your baby may need his/her own stem cells later in life if a disease develops which can be treated with stem cell transplant.
• Your babies brothers or sisters may need your babies stem cells in order to be treated with a stem cell transplant.
• Some one else, who is unrelated may be able to use your babies stem cells for treatment of a disease. Here your babies stem cells would be stored in a public cord bank and therefore would be available to who ever needs them.

Currently there is some what of a controversy in terms of private cord banks. Many people within the medical establishment believe that to a certain degree, private for-profit cord banks are unethical simply because this allows for preferred treatment of individuals who come from families who can afford to collect and save stem cells at birth. In the United States, medical treatment is supposed to be equal regardless of a persons financial situation. In France and Italy, private cord banks are illegal.

Many believe that by allowing private for-profit cord banks to exist, this may open a pandoras box of preferred treatment to those who can afford it. Whether private cord banks are ethical or not, you still need to ask yourself the question. Would your baby benefit from having his/her own stem cells in storage? The answer to that question is of course yes. Only you can decide if you have any moral issues that may prevent you from storing your babies stem cells in a for-profit private cord blood bank. For most people, the question is, is it worth the money to guarantee the availability of your babies stem cells.

Unfortunately, if you want to make sure that the stem cells are available for the baby later in life, or are available to the babies brothers and sisters, the saving of cord blood costs money, which obviously is not covered by health insurance. There is an initial cost for collection and processing, and then there is an annual fee for storage. Saving your babies cord blood can be looked at as a type of insurance. Your baby or your babies brothers and sisters may never need it, but if needed, at least it will be available.

Essentially what you are insuring is a perfect stem cell match for the baby if needed later in life. You are also insuring a greater probability of a favorable outcome from stem cell transplant, for the babies brothers and sisters, if they need it later in life. It should also be noted here that if the brother or sister of your baby develops a disease which requires stem cell transplant, your babies stem cells can only be used if there is a positive match with the brother or sister. It is not automatic. But if there is a good match, the outcome results in decreased occurrence of GVH.

An excellent gift that grandparents can give to a child is the gift of that child’s on stem cells. This would require that the grandparents have the babies stem cells collected and stored by a private cord blood bank. But if this child later in life develops a disease that can be treated with a stem cell transplant, this gift could be a gift of life.

The following is a list of private cord blood banks in the United States. In the USA the primary accrediting agency for family cord blood banks is the AABB. Data provided by Parent’s Guide to Cord Blood Banks

Company	Year Started Banking	AABB Accreditation	Collection Fee	Storage Fee
AlphaCord - IN	2005	applied	$898	$ 97
CorCell	1996	yes	$150+$1500	$125
Cord Blood Registry	1995	yes	$1850	$125
Cord Blood Solutions	2005	yes	$250+$1245	$100
Cord Partners	2003	yes	$395+$1200	$ 95
CordTrust	2007	yes	$1200	$150
Cryobanks International	1994	yes	$1749	$120
Cryo-Cell International	1992	yes	$1595	$125
CureSource	2003	yes	$250+$1150	$ 95
DomaniCell	2006	no	$varies	$varies
Family CB Services	1997	yes	$1015	$115
Genesis Bank	2005	applied	$150+$800	$100
HemaStem	2004	yes	$149+$1350	$149
LifebankUSA	1998	yes	$1750	$115
LifeLine	2001	yes	$300+$900	$ 90
MAZE Labs	2004	yes	$100+$1790	included
Neocells	2005	no	$375+$470	$ 95
Newborn Blood Banking	1997	no	$200+$646	$149
New England CB Bank	1995	yes	$250+$1550	$124
Securacell	2001	no	$195+$1200	$95
Stembanc	2004	no	$1395	$ 95
StemCyte Family	2004	yes	$1925	$125
Stork Medical	2006	yes	$1700	$108
Viacord	1995	yes	$2050	$125

If you are a company which provides cord blood banking, and you are not on the above list, send me an email with the URL of your website, along with the year you started banking, your accreditation status, and the initial fee and annual fee required. I will then include you on the above list.

Cord Blood - Conclusion

To conclude, today baby cord blood storage in a private cord blood bank, is a viable option for parents who want to make available stem cells for possible need later by the baby, or for possible need by the babies brothers and sisters. Having these stem cells available would increase the probability that a successful outcome takes place in the case of a disease which requires stem cell transplant. To have it available for just the baby or the babies brothers and sisters later in life, is not free and the availability can be looked as a type of insurance. You may never need it, but you have piece of mind in that if needed, it is available.