Cord Blood Banking: Separating Fact From Science Fiction

By Cara Paiuk



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.  The National Marrow Donor Program, or NMDP, runs the US national program called Be the Match which matches donated cord blood with patients who need them.  Today, there are over 80 diseases that can be treated with a family member’s or donor’s cord blood, but most of them are pretty rare.  Yet ironically, while clinical trials are underway for using one’s own cord blood to treat a variety of relatively common diseases, it could be years before we know whether it’s effective or not.  Because I could not justify the cost of private banking given the low probability of ever needing it, I chose to donate my son’s cord blood to the Carolinas Cord Blood Bank.  They provided my midwife with a free mail-in collection kit and it felt great to think that my son’s cord blood could save someone’s life one day.

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.

I am admittedly a bit of a know-it-all, but as I started investigating cord blood banking again in earnest (especially because I am currently pregnant with twins), I was surprised to find out how little I actually knew about the topic.  It turns out, like so many things in life, that cord blood banking is not as black-and-white as I had thought.  Whereas I originally believed there was clearly a right and wrong when it comes to cord blood banking, there is in fact ample room for scholarly disagreement as well as personal preference.

The first place I visited to get to the bottom of all of this was CBR’s website. CBR is one of the oldest and largest cord blood banking companies, many of which are now subsidiaries of major pharma companies.  The site required me to fill out a form with my contact information before I could proceed.  As soon as I completed the form I was taken to a page that said, “105,551 families in your area have banked their baby’s cord blood (CB) with Cord Blood Registry (CBR).”  I was then asked to enter my OB/Midwife’s last name to see if they were one of the 7,378 in my area who has collected cord blood with CBR.  I have to be honest; I don’t know what is supposedly considered “my area”…My zip code? My state? My continent? I also don’t know how many of those cord blood units were viable or still cryogenically frozen.  Regardless, all I could think of was the 105,551 cord blood samples banked privately that were not part of the National Bone Marrow Registry.  They would be stored for years and years, most likely never enjoying the opportunity to help someone in need. That astonishingly large number was heartbreaking to me. 

I wanted to gather more statistics to highlight the tragedy of private cord blood banking.  How many cord blood collections were going to private cord blood banks versus how many were being donated to public banks?  How many of the collections were actually viable upon arrival at private banks? Why didn’t any mothers I spoke to know about the public bank option?  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.


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.  So if private cord blood banking isn’t really an insurance policy, what is it?


Investing in your child’s future

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. 

The medical opinions I mentioned earlier which recommended against private cord blood banking did so from a perspective that needs to be examined more closely.  First, they relied on what everyone does in the bioinformatics field – they put a price on human life and determined whether statistically it was worthwhile to spend the money on private cord blood banking given the prevalence of the diseases that cord blood could cure at the time.  Second, you have to acknowledge that many of these medical opinions are four years old or older.  In the past four years, there have been numerous advances in cord blood technology which might change the outcome of their calculations.  Third, their calculations can’t take into account any of the emerging therapies because they haven’t yet made it past clinical trials.  Of course, all of these therapies could turn out to be science fiction (where’s my flying car?), but there are many clinical trials in the works and perhaps some will be successful.  Lastly, and please forgive how crude this may sound, but no one can put a price on your child’s life but yourself.

If you are a number cruncher and don’t think you should assume that unproven therapies will be around in the future, you have great company: my husband.  He would never in a million years pay to store cord blood privately because he’s confident that it’s a bad investment.  And if you believe that cord blood holds the key to curing some of humanity’s greatest ills and therefore storage is a great investment, then you have great company as well: many of my friends in addition to physicians who have gone on the record banking privately, including Dr. Frances Verter.

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, 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”.


When private banking might make sense

  1. When you have a high-risk family medical history of disease(s) currently treatable by cord blood.
  2. When you have a high-risk family medical history of disease(s) currently in clinical trials and speculated to be treatable be cord blood in the future.
  3. When a sibling has a medical condition that could benefit from a cord blood therapy.
  4. When you are at high risk for a premature delivery; your offspring are 10 times more likely to develop cerebral palsy, which is currently in stage 2 clinical trials for autologous cord blood infusion therapy (however, be mindful of cord blood clamping timing).
  5. If you are a mixed race couple.
  6. If you’re highly optimistic about regenerative medicine.
  7. You are financially secure and private banking does not stretch your budget.

Can changes be made to improve the current system?

I think that we need to make it possible for families to bank their cord blood privately while simultaneously making their cord blood available on the public registry.  This hybrid model has worked in Germany, and I think it could work here.  It’s the best of both worlds – parents would have access to their children’s cord blood for emerging autologous therapies, while society would benefit by expanding the pool of available donors.   In order for this to happen, at least two major changes need to occur.  First, private cord blood banks would need to invest in the infrastructure and training to comply with FDA regulations that pertain to public cord blood banks.  And second, the US government needs to offer incentives to private banks to upgrade their facilities and for customers to choose the hybrid option. Since it costs the government $648 - $1,637 to subsidize the processing of a public cord blood unit, as long as they spend less than this amount subsidizing a hybrid private-public cord blood unit, it should be a win-win for families and taxpayers.

Lastly, I think we need to empower and educate more parents to make informed choices about their children’s cord blood.  95% of cord blood is being thrown away, which means we have a long way to go.  23 states have passed legislation requiring medical providers to disclose all cord blood banking options with their patients, and I urge the rest to follow suit.  But in addition to simply having these laws on the books, regulators and the medical community must do a better job of enforcing them.  We need widely available literature that is free from bias, disclosures of conflicts of interest when medical providers have received actual or in-kind compensation from private banks, and training for medical professionals to discuss this sensitive topic with expectant parents.


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. 


What I think now

I have sifted through pages and pages of emails and websites to gather information about cord blood banking, and I’ve struggled to whittle it down to the most relevant and trustworthy information.  It’s very hard to figure out which sources to trust, what data is important, and how to interpret and condense it all into something that’s digestible for the casual reader. 

Private cord blood banks have been accused of misleading customers with incomplete or biased information, but I can attest that the fault doesn’t lie entirely with them.  To begin with, when you go on a first date with someone, don’t you want to put your best foot forward?  Companies do the same thing – they’re trying to sell you a product and want you to focus on the benefits rather than the fine print.  Second, we customers are in a hurry.  This topic is complex, and because we don’t have patience for advertising, companies are forced to make their message as concise as possible.  And third, patients and parents are not educating themselves adequately nor asking enough questions about their family’s medical options.   I can't absolve big pharma companies completely, but ultimately, it is not their responsibility to make our medical decisions for us.

The average patient visit lasts anywhere from 15 to 21 minutes.  That isn’t enough time to learn what you need to know to make an informed decision, and it’s unfair to expect doctors to give you a crash course. We need to take it upon ourselves to read up on medical topics that concern us and come prepared to ask thoughtful questions that will help guide us towards a decision.  First-time parents especially need to learn how to ask questions and stand up for themselves because soon they’ll be making decisions and standing up for their children as well.  The decision about what to do with your child’s cord blood is the first of many you’ll make on behalf of your newborn’s health, and I encourage all expectant parents to make the most of this unique opportunity.