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Feb 21 2014

Cord Blood Registry

"I participated in a campaign on behalf of Dad Central for the Cord Blood Registry. I received promotional item to thank me for my participation."

I was asked to participate in an "awareness campaign for the Cord Blood Registry." While I have absolutely no medical background, had never heard of the Cord Blood Registry and had only a very limited knowledge about cord blood, I am a professional researcher 021-cord-blood-registry-logoand was willing to get up to speed on this interesting topic, so I volunteered for the campaign.

While the Cord Blood Registry sounds very official, maybe even government sponsored, it is a private for-profit biotech company founded in 1992. It originated as a pilot program partially sponsored by the American Cancer Society and the University of Arizona in Tuscon where the company maintains its 80,000 square foot laboratory and storage facility. Today, the Cord Blood Registry is the largest cord blood bank in the world having worked with over 3,500 hospitals in over 100 countries to store over 500,000 cord blood and cord tissue stem cell units which otherwise would have been routinely discarded at birth.

After reading dozens of articles, policy papers and reports about cord blood uses and storage, I learned there is actually controversy and politics surrounding the issues, which I have to admit made the whole thing even more interesting to me. The Cord Blood Registry itself talks about cord blood in the context of being "used to treat," "may benefit," "being investigated," "clinical trials," "treatment options," "help treat," "may provide," etc. It's all very new and emerging, cutting edge, medicine with fantastic potential and possibilities. There are even diseases and conditions in which stem cell treatments have recently been so successful that physicians are beginning to use the term "cure" with respect to umbilical cord blood transplantation.

[UPDATE]After reading several more articles including ones from the Journal of the American Society of Hematology, I reworded the last sentence to more accurately reflect the current successes in cord blood treatments. [END UPDATE]

020-cord-blood

Stem cells have been used in the treatment of over 80 diseases, including leukemia, lymphoma and anemia. Cord blood is rich in these potentially life-saving stem cells. (It should be noted that cord blood contains adult stem cells not the controversial embryonic stem cells.) Further, there are currently over 200 clinical trials using cord blood in transplant and regenerative medicine. Clearly, there is benefit and amazing potential for the use of cord blood and the stem cells it contains.

There are several options available regarding what can be done with cord blood. The Cord Blood Registry provides private/family banking for a fee. There is the option of public banking where the cord blood is donated to a public bank, at no cost to the donor, but like regular blood donations the individual donor family retains no right to use the cord blood. Absent, private or public banking, cord blood is discarded as medical waste. Finally, the Cord Blood Registry provide one very cool (no cryogenic pun intended) option for families with certain qualifying immediate medical needs, in which processing and storage for 5 years is absolutely FREE!

022-cord-blood-registry-dewars-room

It is with the distinction between private and public banking that there comes some controversy. Dr. William T. Shearer, the professor of pediatrics and immunology at Baylor College of Medicine who helped write the American Academy of Pediatrics' position on private storing, states that the Academy strongly recommends donating cord blood to a public bank but only recommends privately banking cells if an ill older sibling might benefit. Dr. Shearer stated, five years ago, that claims of being able to fix future disease and injury using a person's own cells was "a little far fetched, frankly." But, in the same breath he also said the uses of donated cells are immediate and greatly needed. Personally, I cannot reconcile those two statements. The common institutional and government position consistently favors public banking over private banking for reasons which are either inartfully or just falsely stated. Public banking cannot be immediately and greatly needed while the benefits of private banking are far fetched.

The truth, which I'd respect such proponents more if they just stated it, is that they simply value a more likely public good over a less likely private good. This makes sense when you are a faceless bureaucrat telling the unwashed masses how to live their lives or a clinical trials physician looking for more cord blood matched subjects to analyze. But, when you are talking about what is best for you and your own family, the public versus private benefit analysis takes on a whole new light. The other thorn in the bureaucratic statist's side is the fact that there is cost involved with private banking and, heaven forbid, only those who can afford it can take advantage of it.

023-human-stem-cell

I think a good analogy would be bone marrow donation which we are all more familiar with. Imagine if you could only donate bone marrow one time at birth. Knowing that a child would be 100% match for its own bone marrow and a sibling a 25% match but a random stranger would only have a 1 in 100,000 chance of matching, would you privately bank your child's marrow or publicly bank it? It's easy for someone stating public policy to advocate for public banking but I can't imagine an actual parent making that decision if they have the resources available to them for private banking.

All of this leads to the question of cost. Private cord blood banking with the Cord Blood Registry costs a one-time payment of $1,995 plus an annual fee of $130 while cord blood together with cord tissue banking costs a one-time fee of $2,995 plus an annual fee of $260. Until March 24th, anyone who visits CordBankingBasics.com and completes an information request will receive a $200 discount on banking a newborn's umbilical cord blood with the Cord Blood Registry.

One thing remains undisputed, there is not enough education of expecting parents regarding the banking of cord blood. I recall, briefly and probably to superficially considering the issue and deciding that the requisite funds would be better placed in our boys' 529 college plans. I don't regret our decision, but our boys have been exceptionally healthy. Everyone needs to make their own well-informed decision based on their family's needs, beliefs and resources.

Posted by Don |

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