Private cord blood banking – worth your money?

by Alexey Bersenev on October 4, 2008 · 13 comments

in business, reviews, under discussion

If you’re planning to have a baby soon or ever wondering about what “stem cell business” means and how they can make money, you may have come across “cord blood banking business“.

I was not able to miss a great discussion based on an excellent review of Michael SullivanBanking on cord blood stem cells, published in Nature Review Cancer. I have inserted a lot of citations below to get you to the point of this discussion.

The altruistic gifting of umbilical cord blood stem cells from one’s newborn child for the benefit an anonymous individual anywhere across the world is a remarkably generous gesture. These unrelated cord blood donations are stored and curated by an international network
of 36 public non-profit umbilical cord blood banks in 23 countries, and made available to accredited stem cell transplant centers for the treatment of life-threatening diseases, including cancer, bone marrow failure syndromes and genetic metabolic disorders.

Private (or family) cord blood banks offer a service to store a newborn child’s umbilical cord blood for possible autologous or related (family) allogeneic stem cell therapy. Development of private cord blood banking has always been under discussion. Many experts indicated pros and cons of this type of “stem cell business”.
I’m going to cite rationales against private cord blood banking, indicated in Michael Sullivan’s review (.pdf):

European commission’s Group on ethics in Science and new Technologies (eGe)
report on the ethics of private umbilical cord banking:
“The legitimacy of commercial cord blood banks for autologous use should be questioned as they sell a service, which has presently, no real use regarding therapeutic options. Thus they promise more than they can deliver. The activities of such banks raise serious ethical criticisms.”

American academy of Pediatrics:
“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 that promise to insure infants or family members against serious illnesses in the future by use of the stem cells contained in cord blood”.
“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, is unwise.”

Royal college of obstetricians and Gynaecologists (rcoG)
“The RCOG strongly supports the concept of a NHS Cord Blood Bank for allogeneic storage of donated cord blood and would like to see it well funded. However, it remains unconvinced of the benefit of personal commercial banking for low-risk families.”

World Marrow Donor Association: Policy Statement for the Utility of autologous or Family cord Blood Unit Storage (see Url in further information)
“Today the likelihood that an autologous cord blood unit will be used for transplantation is very low. There is currently no clear proof that these cells will be able to be used for regenerative medicine or to treat other diseases in the future.”
“The legitimacy of commercial cord blood banks for autologous use should be questioned as they sell a service which has presently no real use regarding therapeutic options. Thus they promise more than they can deliver.”

Dr. Nietfeld in his commentary (.pdf) argued Dr. Sullivan, indicating that most negative opinions (came from respected organizations) about autologous cord blood banking are based on incorrect calculation for a probability of the future use, and data need to be updated.

First, that the probability of undergoing an HSCT is much higher than others believed

1:200 according Dr. Nietfeld calculation

Second, that the quality of CB cells has been maintained over a 15‑year period of cryogenic storage and that in cryobiology there are no reasons why this would not also be the case for a lifetime.

Third, that stem cell expansion technology could solve the problem of there being too few cells in a CB unit.

Fourth, that research and clinical trials in areas such as neurological disorders (NCT00593242) and diabetes (NCT00305344) show the developments in the direction of autologous CB treatments for diseases that have a much higher incidence than those requiring haematopoietic reconstitution.

Fifth, the number of children who have received autologous CB treatment is more than 60 to date.

Dr. Sullivan replied (.pdf) that, Nietfeld’s calculation included some children’s tumors, which could be treated by autologous cord blood transplantation as an alternative only and clinical trials are still in progress.

The prospect of stem cell therapy is tantalizingly close, although reviewing the publicity material on many commercial cord blood bank websites would give the lay public the impression that stem cell therapy for regenerative medicine is already in routine clinical use it is not!

and something about business:

A recent survey of US commercial cord blood banks by the American Society for Blood and Marrow Transplantation reported a total of 490,000 privately banked cord blood units. At an average of US$2,000 to collect and store a cord blood unit for 20 years, the US health consumer has invested nearly US$1 billion, resulting in the treatment of just 17 patients with malignancy or marrow failure and with no peer‑reviewed published clinical outcome data.

David Harris in his commentary (.pdf) – Cord blood stem cells: worth the investment also argues against Dr. Sullivan’s point:

The overall premise of Sullivan’s commentary is that commercial cord blood banks currently offer a “superfluous service“. I do not understand how one can make that claim when solid scientific evidence supports the benefits of using related allogeneic cord blood over an unrelated source.

So it seems that discussion between the experts will never finish. Alternatively, hybrid private-public banking model for CB storage has been proposed (.pdf).

In its 2008 annual meeting, the WMDA established an ad hoc ethics subcommittee to determine the combination of private and public CB banking and to consider types of CB banking models, based on patient priority, conditional donation and CB unit sharing.

I’d agree with this innovative model (if we forget the business issue), as far as patients will benefit from it more.
What do you think?

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Wiki: Cord blood bank (especially read: Controversy Among Medical societies)

picture credit: TEK IMAGE / SCIENCE PHOTO LIBRARY

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{ 12 comments… read them below or add one }

Art October 4, 2008 at 2:53 pm

“service, which has presently, no real use regarding therapeutic options.” – This is ignorance. No one did not even have to prove. Getting this material from any other source is more expensive. 30% fatality today – this is oncology. Use this material after chemotherapy – already worth saving. The use of autologous material to the age of the bank’s clients will reach 90-100%.

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Art October 4, 2008 at 3:25 pm

I have a question. If a person at birth would be a reserve of bone tissue? Any stupid windbag would also bickered about whether to keep him or not?

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Art October 4, 2008 at 3:48 pm

In fact, all comments of more than 3-5 years ago. And very typical – about this talk pediators, obstetricians, gynaecologists and officials.

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Alex October 5, 2008 at 2:59 pm

to Art –
Yes, most of organization’s opinions, cited in review pretty old (some of them 1999, 2004) and definitely need to be updated, because field is so dynamic.

There is no question – to store CB or not, only question that “would you donate for public register or store for potential personal use?” Here, each parent, knowing all of real information (all pros and cons), make decision about “worth investment”.

The main argument of Dr. Sullivan is calculation of probability of potential use of CB unit, which should NOT include current ongoing clinical trials (not multicentral and not randomized), because we don’t know how they going to finish in few years. But I’m pretty sure, some of them in few years will increase probability dramatically.

So, knowing what’s going on in this dynamic field, I’d spend 1000-2000$ + 100-200$ annually for personal storage. Also I really like new “hybrid” model, which can solve some controversies.

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Art October 8, 2008 at 3:43 pm

to Alex

Most of European cord blood bank’s discuss and dream about mix model. This model is very good! That bussines looks like “responsible and respect”. Unless even it will be run – private storage have better future. imho :)

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Lee Buckler November 25, 2008 at 5:46 pm

According to the National Marrow Donor Program, the number of stem cell transplants using cord blood as a source of stem cells will surpass those using bone marrow in 2007. In 2004, they reported approximately 100 cord blood transplants through their program, in 2005 approximately 200, and in 2006 approximately 500.

July 2007, Coriell reported “More than 8,000 cord blood transplants have been performed worldwide since 1988. ”

Quoted from a Thermogenesis press release October 9, 2007:
“Cord blood stem cells have been transplanted more than 11,000 times to treat patients with life threatening diseases, including leukemia, lymphoma and more than 60 different genetic disorders. Further, recent peer-reviewed scientific articles indicate stem cells residing in cord blood can also differentiate into other tissues of the body, including the brain, gone cartilage and muscle, indicating potential broader application of cord blood stem cells in future clinical use. With approximately four million births per year in the Untied States alone, cord blood represents a large, natural resource for use in the treatment of malignant and genetic diseases in which sourcing does not involve donor risk. Cord blood is saved when a baby is born, processed and cryogenically stored for future use. Following the first successful cord blood transplant performed in 1988, awareness of the potential therapeutic value of cord blood stem cells has increased and collection and storage has grown rapidly.”

Generally the common understanding is that there are over 40 conditions currently treatable with cord blood stem cells. See Parent’s to Guide Cord Blood

I’m going through the debate right now of whether to bank private or public. I think I’ll go public but I’m Canadian and so am more comfortable with the whole concept of a public health care system than most in the U.S. are yet.

–Lee

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Lee Buckler November 25, 2008 at 5:47 pm
Alex November 25, 2008 at 11:57 pm

Lee,
why private and public can not work together?

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Casey February 9, 2009 at 4:52 pm

I am Canadian as well and when I was pregnant, I did look into donating the cord blood to a public bank. However, there is first of all no public cord blood bank in Canada, and second of all because I have had family members who have had leukemia, my child’s cord blood would not have been accepted anyway. public banks are funded by the government, so they can only afford to store the best samples at a limited number. Thus, there are no guarantees that after I donate, I will be able to use it, because it may have already been sold to another family or discarded without my knowledge. In the end I banked with a Canadian company called Healthcord, I went the private route because I don’t want to take the risk of losing the cord blood, and I am ‘ok’ with the idea of paying for my own storage.

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Kostas Papadopoulos June 19, 2009 at 1:57 am

2008 marks the 20th anniversary of the first use of umbilical cord blood (UCB) as a source for hematopoietic stem cell transplantation. In those early days, there was great doubt and skepticism about the utility of UCB as a source of hematopoietic stem cells, yet, today, that first patient is still alive and cord blood is a life-saving, established treatment option for patients in more than 85 diseases such as select oncologic diseases (cancer of breast, kidney, testes, ovary), immunologic diseases, bone marrow failure, hemoglobinopathies, inborn errors of metabolism and autoimmune diseases (SLE, Rheumatoid arthritis, Diabetes type I, Multiple sclerosis). Cord blood is today donated or privately banked for transplantation on a routine basis. In 2008, there were more than 1,000,000 samples stored privately or which 250,000 in Asia.

Hematopoietic stem cells (stem cells that make our blood cells) are found in bone marrow, peripheral blood and umbilical cord blood and each source has been extensively used in bone marrow transplantations since 1957, 1981 and 1988 respectively, thus not a new exercise. The novelty lies in the realization, insight and possibility to store one’s family’s own stem cells for future ailments. These hematopoietic stem cells can repopulate a damaged bone marrow after chemotherapy, radiation or disease and differentiate to create blood-forming cells, including white blood cells, red blood cells, and platelets as well as a new immune system. Stem cells obtained from the cord MUST not be confused with animal stem cells of any source, stem cells from other parts of the body or embryonic stem cells that are only produced in the laboratory and that are strictly and rightfully controlled by National Drug Agencies around teh World.

So, the 25K US$ question (virtually) to be answered is: where do you find stem cells when you need them if you do not have any? Despite the large and increasing number of stored samples, approximately 50–70% of the patients without stored stem cells and in need of a transplant are still unable to find a suitable adult donor in a timely manner. Your doctor will initiate the search for a match which due to tissue type diversity will inevitably start in your own family. One in four (25%) is the chance that one of your biological siblings will match you, that probability increasing with increasing number of siblings compared to 1 in 50,000 to 100,000 among unrelated persons. If there is no match, then a public bank will be contacted and you will need to prepare the above mentioned 1,000,000 Baht for an eventual match as that is the cost of donated stem cells (varies between 25,000-50,000 $US as most adults need 2 samples). If you do not have the means to buy you don’t get them but then again you may also perish if no match is found or it is not found in time. This problem is more compelling in patients belonging to ethnic and racial minorities who, because of larger tissue type diversity and some reluctance to volunteer as adult donors, have an even lower probability of identifying an unrelated adult donor. What is relevant for all of us in this globalized world is mixed ethnicity persons (possibly our grandchildren!) will in the future face an impossible task in finding matching stem cells.

So in those that did get a bone marrow transplant, where did they find the stem cells? In many transplantation series the percentages reported on the origin of stem cells (own, sibling or stranger) offer surprises as in adult bone marrow transplantation almost 87% obtained the life-saving stem cells from themselves or the immediate family (own in 68%, siblings in 19%) and only in 13% an unrelated donor from a public bank was involved while similar trends were seen in children (65% in total, own in 42%, siblings in 23%; only in 35% of the cases an unrelated donor was involved). These percentages along with the 1 in 217 lifetime probability of needing a hematopoietic stem cell transplant make us understand that we should store for ourselves and our families! Priceless is the knowledge that one has their own family stem cells stored when a disease strikes as swift procurement of stem cells is important since delay in the time to transplant can adversely affect survival and neurological outcome, particularly in high-risk malignancies and congenital neurodegenerative disorders while the psychological impact on a waiting family is substantial.

Costs are minimal and worth the investment! Current prices are less than 2K US$ for collection and lifetime storage depending on the provider of choice and promotions (slightly less than 26 US$ per year amortized over the projected life expectancy of 77 years of a newborn today). The opinions of the American Medical Association and the American College of Obstetricians and Gynecologists (ACOG) state that expectant parents must be informed of their cord blood storing options and that the probability of needing cord blood stem cells is 1 in 2,700 before age 20 (compare to probability of dying in a traffic accident at 1 in 6,000 per year). Moreover, 20 US states in which more that 2/3 of the total US births are occurring, have recently enacted legislation on cord blood education!

Recent reports from the US and other parts of the world show that own cord blood and peripheral blood stem cells can cure more diseases than just blood diseases such as diabetes type 1 and 2, have amazing effects on animal models of Alzheimer’s disease and other Central Nervous System ailments, spinal cord injury and retinal disease models, heart muscle regeneration, and cerebral palsy (114 at Duke’s Medical Center in the US and 1 of THAI StemLife in Thailand and Asia. These unique cases have generated worldwide interest and been reported in numerous prestigious international stem cell Congresses.

Cord blood stem cells offer astounding promise and hope that will revolutionize and change the way we practice medicine in the years to come. Aged, damaged, or lost cells could regenerate and tissues/organs can be repaired by autologous cell-replacement therapies. Yet incurable genetic and degenerative disorders in the human body can be reversed and even cured by the use of cord blood stem cells. Let us not deprive our children of this once in a lifetime circumstance to partake in the new applications and opportunities that will ultimately derive from this gift of Life. Expectant parents as custodians of the cord blood should be properly informed of their options with regard to cord blood banking or a refusal may well violate the child’s human rights with legal implications to providers.

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bank cord blood January 2, 2011 at 8:26 am

Interesting information especially When you see all that children who are alive today because of cord blood banking, cord blood banking and preserving changes everything. This may not be too relevant, but you only get one chance to do this. I also run a website with some useful information about stem cells and cord blood banking. If you want you can visit my website.

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Americord Registry August 25, 2011 at 11:09 am

I work for a cord blood bank and can give you the facts behind the over-promotion. See http://cordadvantage.com/cord-blood-blog/2011/5-straight-facts-about-cord-blood-viacord-viacell-and-cord-blood-registry-wont-tell-you/ to find 5 Straight Facts About Cord Blood ViaCord / ViaCell and Cord Blood Registry Won’t Tell You.

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