Cord 3

The following is excerpted from an as yet unpublished article. Please contact the author for additional information regarding the full article.

An introduction to my journey

Let’s face it: every first-time mother buys too many supplies, over-priced baby clothes, and a whole slew of things that aren’t needed. The problem is, you often don’t find out how unnecessary it all was until much later when the receipts are gone and refunds are impossible. That’s how I felt about private cord blood banking until recently.

Three years ago when I was pregnant with my first child, I was bombarded with cord blood advertising at every turn: on the web, in magazines, and at my medical providers’ offices. Noting that my hospital, OB/GYN, and midwife all lined their walls with cord blood banking posters, I got the impression that it was indispensable. I decided to research the issue for myself so I could make an informed decision and counsel the pregnant women who assume that older means wiser (ha!) and gravitate towards me for advice.

After some digging, I discovered that there was another option to banking cord blood with the companies advertising in the doctor’s office: public cord blood banking. Public cord blood banking is similar to donating blood – by pooling the contributions of tens of thousands of donors, a valuable resource is created for society as a whole.

I was left wondering why my medical providers did not disclose the option to donate my son’s cord blood to a public bank. I discovered that a multitude of medical societies including the American Society for Blood and Marrow Transplantation, American Congress of Obstetricians and Gynecologists, the American Medical Association, and the American Academy of Pediatrics caution against private cord blood banking. They recommend that medical providers discuss all available options, disclose potential conflicts of interest, and steer patients towards public banking. Many of these associations’ opinions share in common the observation that expectant families are emotionally vulnerable and susceptible to misleading advertising about the usefulness of cord blood banking; for instance, when they claim that cord blood can be used to treat over 80 diseases, private cord blood companies fail to clearly state the caveat that 99% of the time it can’t be used to treat your own child. I didn’t understand why my medical providers promoted a service that their professional organizations did not support, and I hoped that they weren’t being swayed by financial incentives. I became convinced that private cord blood banking was a bad deal, one of the aforementioned things you buy and never need.

The plot twists and thickens

When a friend of mine whom I have always admired as a model of integrity and my go-to gal for everything pregnancy-related (she is a well-educated and recognized birth advocate) recently agreed to partner with a private cord blood bank, I was mortified. I felt that she had sold out, and I became newly determined to uncover the seedy underbelly of the private cord blood industry.

The information I wanted to find wasn’t readily available, so I reached out to thought leaders in the field including Dr. Frances Verter (founder of the Parent’s Guide to Cord Blood Foundation, parentsguidecordblood.org), National Marrow Donor Program (NMDP, BeTheMatch.org), and Cord Blood Registry (CBR, cordblood.com). Slowly, a picture emerged that was more complex than anything I had anticipated, forcing me to question and ultimately abandon many of my previous beliefs about cord blood banking.

Cord blood by the numbers

CB (Cord Blood) units stored in private banks in the US ~ 1,000,000 [1]
CB units needed in US public banks to reach 90% match rate for most demographies 1,000,000 [2]
Private cord blood bank combined market share of CBR and Viacord ~ 70% [3] [4]
CB units stored in private banks worldwide ~ 1,788,000 [5]
CB units registered in the US public Be the Match registry 205,900 [6]
Median cost of storing CB in a private bank, year 1 $1,975 [7]
Median cost of storing CB in a private bank, year 20 $4,095 [8]
Cost of processing CB for a public bank $1,500-$2,500 [9] [10]
Average reimbursement by federal government’s NCBI program to public banks for each CB $1,110 [11]
Percent of public cord blood bank operating costs covered by sales of CB units for transplant 81% [12]
Median amount received by public banks for transferring cord blood units for transplant $30,000 [13]
CB units released by NMDP in the US from 2005 – May 2011 3,999 [14]
CB units released by CBR and Viacord since 1993 460 [15] [16]
Percent of CB units released by CBR and Viacord for allogeneic uses 62% [17] [18]
Percent of CB units released by CBR for clinical trials of autologous uses 38% [19] [20]
Percent of cord blood that ends up as medical waste 95% [21]
Percent of public bank donations not meeting FDA requirements disposed as medical waste 60% – 80% [22]
The cumulative chance of needing an allogeneic hematopoietic stem cell transplant by the age of 20 1 in 2500 [23]
The cumulative chance of needing an autologous hematopoietic stem cell transplant by the age of 20 1 in 5000 [24]
Percent of cord blood transplants from the New York Blood Center used to treat leukemia 62% [25]
Percent of unrelated hematopoietic stem cell transplants performed with cord blood ~30% [26]
Percent of individuals requiring a stem-cell transplant who have a matching relative 30% [27]
Likelihood of adult donor match of marrow or peripheral blood stem cells through the NMDP 66 – 93% [28]
Likelihood of finding an adult donor match of cord blood through the NMDP Undisclosed

 

Insurance vs. Investment

Banking cord blood privately is often presented as a form of insurance. I don’t think this is a solid analogy. Insurance is supposed to protect you from a future risk by providing you with a known benefit. For example, car insurance will pay for auto repairs if you get into an accident, and home insurance will replace your house if it gets destroyed. With private banking, you don’t know which diseases will be treatable in the future with autologous cord blood. Today, autologous cord blood is not used as the standard treatment for hardly any diseases, and privately banked cord blood has merely a 1 in 4 chance of matching a natural-born non-identical sibling.

Rather, private cord blood banking is an investment because its future value is uncertain. Family banking is a medical investment that can turn out to be life saving, or it can be a money pit. As with all financial investments, you have to carefully consider your financial situation, risks, and expectations before making your decision. But unlike financial investments, this is infinitely more difficult to think about rationally because you’re dealing with something priceless – your child’s health.

Like any investment, you can only do so much with the money and information you have available when you make your decision. The responsible thing to do as a parent is to carefully think about your finances, disease risks, and how you’ll feel about your choice in the future under different contingencies. The most reputable, objective, and well-presented source of information about cord blood on the Internet is parentsguidetocordblood.com, but it still doesn’t have all the answers, nor can it tell you what’s right for you. While public banking makes sense for a great number of people, there are also legitimate reasons and circumstances for private banking. And, in a situation like mine when you’re pregnant with twins so you’re not eligible to bank publicly but can’t afford to bank privately, it’s also OK to choose “none of the above.”

Can’t we all just get along?

I was really heartened to hear every expert I spoke to talk about how we should put the differences of public versus private cord blood banking behind us. The only enemy here is the trash bin. Cord blood is a valuable resource, and we should be encouraging everyone to either donate it to a public bank or store it in a family bank whenever possible. 95% of cord blood is being thrown away, which means we have a long way to go. We need widely available literature that is free from bias, disclosures of conflicts of interest when medical providers receive actual or in-kind compensation from private banks, and training for clinicians to discuss this sensitive topic with expectant parents.

The preceding was excerpted from an as yet unpublished article. Please contact the author for additional information regarding the full article.

[1] Response from Dr. Frances Verter of the Parent’s Guide to Cord Blood Foundation
[2] www.gao.gov/assets/590/585682.pdf
[3] www.cordblood.com/en/best-cord-blood-bank/best-stem-cell-bank
[4] www.viacord.com/references/index.aspx
[5] Response from Dr. Frances Verter of the Parent’s Guide to Cord Blood Foundation
[6] Response from NMDP
[7] parentsguidecordblood.org/price_options.php?country=233
[8] parentsguidecordblood.org/price_options.php?country=233
[9] parentsguidecordblood.org/newsletter_archive/newsletters_2012-09.php#cord_banking_cost
[10] www.gao.gov/assets/590/585682.pdf
[11] www.gao.gov/assets/590/585682.pdf
[12] www.gao.gov/assets/590/585682.pdf
[13] www.gao.gov/assets/590/585682.pdf
[14] www.gao.gov/assets/590/585682.pdf
[15] www.cordblood.com/en/best-cord-blood-bank/~/media/Files/FAQs/transplant_summary.pdf
[16] www.viacord.com/Images/250TransplantSummary_tcm117-150005.pdf
[17] www.cordblood.com/en/best-cord-blood-bank/~/media/Files/FAQs/transplant_summary.pdf
[18] www.viacord.com/Images/250TransplantSummary_tcm117-150005.pdf
[19] www.cordblood.com/en/best-cord-blood-bank/~/media/Files/FAQs/transplant_summary.pdf
[20] www.viacord.com/Images/250TransplantSummary_tcm117-150005.pdf
[21] Response from Dr. Frances Verter of the Parent’s Guide to Cord Blood Foundation
[22] parentsguidecordblood.org/newsletter_archive/newsletters_2012-09.php#cord_banking_cost
[23] www.ncbi.nlm.nih.gov/pmc/articles/PMC2531159
[24] www.ncbi.nlm.nih.gov/pmc/articles/PMC2531159
[25] Extrapolated from www.nationalcordbloodprogram.org/downloads/list_of_diseases.pdf
[26] www.cancer.org/acs/groups/cid/documents/webcontent/003215-pdf.pdf
[27] www.marchofdimes.com/pregnancy/labor_umbilical.html
[28] Response from NMDP
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