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DROdio

Cord Blood: To bank or not to bank?

  • DROdio
  • 4 years ago
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Sue and I have been discussing cord blood lately.

The reason this is such a hard decision for us is because of the "you don't know what you don't know" factor. If we were to just consider the value of cord blood banking today, I would probably say "no" to it -- at least to private banking.

There are basically three options:

  1. Do nothing with the cord post-birth
  2. Bank it to a public bank for others to benefit from it (typically free)
  3. Bank it to a private bank for our child's possible use later in life (typically about $2k up front and $150 per year)

However, what will the next 100 years of medical innovation look like? Stem cells are already valuable in medicine, and considering how flexible they are in transforming into any type of cell in the body, I don't expect their value to decrease over the lifetime of our child, and I wouldn't be surprised if they become the building blocks of personalized medicine and lifesaving cures in the future. And there's only one opportunity -- at the child's birth -- to make this decision. You can't go back and re-do it later.

And then there are the touchy-feely articles like these:

"Amanda was diagnosed with leukemia and given two weeks to live when she was 23, but her doctor at Baylor found cord blood that was a 99% match. The cord blood cured her leukemia and a blood disorder that had required daily shots since childhood."

That child was able to use cord blood from a public bank.

So I look at banking stem cells from cord blood like insurance: We hope our child never has to use them, but if she does, they might make a tremendous impact in the outcome.

We're leaning towards private banking, but we haven't made a final decision yet. I'd love to hear opinions from anyone who has gone through the process (either private or public banking).

The biggest private cord bank company is CBR, the "Cord Blood Registry", but they have some very negative Yelp reviews. One reviewer wrote:

"Beware! Be very careful about signing up with any private cord blood bank, but especially this one! I am an ultrasonographer and have worked in high-risk OB for over 20 years. When I first became pregnant 12 years ago, I did a lot of research about the future benefits of saving your baby's stem cells, and there are many and that will only increase in the future. However... my kids are now healthy 11 and 9 year olds and we decided that the extra $200.00 a year was an unnecessary expense. I called the company and told them I wanted to terminate the contract. I asked what happens to the cells, can I donate them to a public bank? etc. GUESS WHAT? you sign all rights to your own children's DNA over to them, unless you want to pay the $2000.00 fee to have them send the cells to a 3rd party (not even to yourself) and have them destroyed."

That got me looking around at other options.

One reviewer mentioned StemCyte. There are a few things I really like about their approach, one of which is their public + private focus: They serve as both a public cord bank, as well as being a private one.

This means that although they are newer to private cord blood banking (they started doing private banking in 2004, but have been a public cord bank since 1992), they've had over 315 transplant centers using their units:

They also make other claims that are harder to verify -- at least for me as a non-medical professional. For example, this quote:

"StemCyte’s high engraftment rate is the result of our proprietary, modified whole blood processing (5 patents pending). This method consistently delivers an unexcelled post-processing cell yield and post-thaw cell recovery of 99.9%. StemCyte has a processing method that has the highest cell recovery and our transplant experience of over 1700 is a strong measure of that quality.

One reviewer on BabyCenter wrote:

"After doing my own research, StemCyte is the best in research and even has a public bank (with more rigorous requirements and accreditations).They have the highest Cell Recovery Rate.They offer a $50K lifesaver guarantee meaning they'll give you $50K PLUS refund all service fees paid PLUS find replacement sample from their public bank if your baby rejects his/her own cord blood. StemCyte works with over 130 leading transplant cenrs [sic] worldwide."

Are those a real differentiators? Hard to know. I wish the cord registries were better reviewed by independent sources like Consumer Reports. The only guidance from CR was this article in 2009 in which the author decided against private cord blood banking. She wrote:

"Surveys went to 152 doctors in the United States and Canada, and 93 responded. Out of the thousands of stem-cell transplants these doctors had performed, only 50 had involved privately-banked cord blood. Forty-one of these cases were "allogeneic" transplants, in which blood from one individual was used to treat another member of the family. And in 36 of these cases, families already knew of a member who was a candidate for a transplant before banking the blood. The researchers found only a few cases where cord-blood banked "just in case" had been used. They also found only nine "autologous" cases, in which children had transplants using their own stem cells. This, say researchers, is in contrast to the main marketing message of private banks, which promote the idea of children using cells from their own cord blood. (Doctors, in fact, won't use a child's own stem cells for some illnesses, as this could reintroduce the illness into the child's body.)"

I'd love to hear thoughts from anyone who is going through this process, or has gone through it in the past.

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Frankly
  • Frankly
  • 4 years ago
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It is like a title insurance.

Anyhow, We got it for just two years. I believe that is the highest likelihood of use.

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Allen
  • Allen
  • 4 years ago
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Hi!

From the blog post it looks like you've looked over the commercial options pretty thoroughly, so that's great. On the science side, I had a look at recent recommendations via PubMed, which is an informative if more academic resource: http://www.ncbi.nlm.nih.gov/pubmed/ For questions like these, I usually filter results to be only "reviews." The summarized data suggest it's not a particularly valuable option. In particular, private storage facilities don't score as well on sample prep and maintenance, and the calculated likelihood that a healthy kid would successfully use the cells is low (1:15,000). I was also troubled by the reviewer's points that: 1) if the disease basis is genetic, then the cord cells will have that same issue (same genome) and 2) that total cell yield is low enough that in some cases the kid won't have enough to work with anyway. Here's that cord blood banking review:

http://www.aafp.org/afp/2011/0915/p661.html

Another consideration is that creating "stem cells" (induced pluripotent stem cells or iPS cells) is steadily becoming closer to being a reality. Now, this is a "one in the hand vs. two in the bush" calculation, because we're not there yet. My guess, which isn't expert by any means, is that it's reasonable to expect technical limitations to be overcome during your child's lifetime. In any case, that's my assumption about progress during our son's life.


Wikipedia had a decent non-technical summary that agreed with what I saw in the research literature: http://en.wikipedia.org/wiki/Induced_pluripotent_stem_cell#Safety_for_regenerative_medicine

So my wife and I decided not to bank our son's cord blood. Having said that, if there had been genetic abnormalities suggesting that he might need to access those cells in the near future then we might have made a different call.Hope that helps. I'll post it on your blog as well in case others want to check the links for themselves.

Allen Henderson

[email protected]

https://twitter.com/hypusine

CEO of Socialize. Entrepreneur & lifehacker in Silicon Valley. Hopeless travelaholic.
DROdio
  • DROdio
  • 4 years ago
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WOWZERS Alan thank you for the thoughtful and in-depth reply!

You've given us a lot to think about.

Here are some expanded quotes from the http://www.aafp.org/afp/2011/0915/p661.html link you shared:

"In a recent study, privately stored umbilical cord blood samples were found to have a smaller volume per collection, lower cell counts, and a higher incidence of bacterial contamination than those stored in public banks.27
A common concern from the scientific community is that marketing used by private banks overstates the likelihood that families will use their cord blood.18,28–30 Private banks often emphasize the potential use of cord blood to treat diseases in the future as a reason to store cord blood. It is difficult to estimate the likelihood of using one's own (autologous) cord blood in the future, but current data suggest that the chance of using a cord blood unit for autologous transplant is no better than one out of 15,000.30–33 Diseased cells may be present in cord blood, making it undesirable for autologous transplant in some cases. A recent statistical analysis has shown that private banking is not cost effective.
The American Academy of Pediatrics,4 the American College of Obstetricians and Gynecologists,5 the American Medical Association,6 the American Society of Blood and Marrow Transplantation,7 and the World Marrow Donor Association8 have published guidelines regarding umbilical cord blood. One of the key recommendations from these guidelines is that parents be encouraged to donate umbilical cord blood to public banks, which accept donations free of charge and provide stem cells to anyone who needs them.4,6–8 The guidelines also recommend cord blood banking through the Related Donor Cord Blood Program when the donor's sibling has an illness that may be treated with a cord blood transplant (this program stores cord blood units for the exclusive use of the donor family).4–8 Private banking for unidentified possible future use is not currently recommended in the guidelines.4,6–8"

After reading through these guidelines, I'm leaning towards donating to a public bank instead of banking privately.

Anyone else have any thoughts/suggestions/advice?

CEO of Socialize. Entrepreneur & lifehacker in Silicon Valley. Hopeless travelaholic.
DROdio
  • DROdio
  • 4 years ago
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Sue and I also have some questions for any of the cord banking registries that are willing to answer:

  • Do any of them have virtual tours of their facilities? The best I could find was a low res picture on Facebook of the Stemcyte facility, but I'd really like to have a better understanding of the facility and the procedures the facility takes to ensure the long-term safety and viability of the cord blood.
  • We've heard that it's only possible to use the cord blood once. Is that true? That would greatly diminish the value of the service to us.
  • We want to wait to cut the cord until it finishes pulsating. Will it still be possible to bank cord blood if we do this?
  • What contingency plans does the registry have if it were to go out of business?
  • Is what the reviewer said about CBR above true? Do other registries have similar policies?
  • What else should we know about the advantages of banking with a specific registry?
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Gcrouse
  • Gcrouse
  • 4 years ago
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Do any of them have virtual tours of their facilities? The best I could find was a low res picture on Facebook of the Stemcyte facility, but I'd really like to have a better understanding of the facility and the procedures the facility takes to ensure the long-term safety and viability of the cord blood.

A: CBR has a video tour of our lab available on our website here (http://www.cordblood.com/en/best-cord-blood-bank/cord-blood-processing) that shows how the cells are processed and stored. Our lab currently stores more than 500,000 cord blood and tissue units for families worldwide; in fact, we have more experience processing and storing newborn stem cells than any other bank in the world.

We take every step to ensure that these newborn stem cells are available to families when they need them. CBR's quality control team performs over 5 million sample checks per year which includes 3 million temperature checks, 20,000 environmental sterility tests, and a total of 95 control checks on each sample to ensure processes are working correctly so that these stem cells are kept protected.

Tucson itself was carefully chosen as the location for our lab due to its very low risk of natural disasters, such as hurricanes, tornadoes, and earthquakes; any of these events could interrupt consistent, long-term storage of stem cells.

We also offer a $50,000 Quality Service Guarantee on cord blood and tissue banking services. Our commitment to your family is reflected in our years of research plus continuous investments in innovation. We stand by our promise to families by offering the extra security of a guarantee. If you need to use the cord blood stem cells stored with CBR for transplantation and the cells fail to engraft, you'll receive a full refund of all fees paid to CBR for cord blood services plus an additional $50,000.

Q: We've heard that it's only possible to use the cord blood once. Is that true? That would greatly diminish the value of the service to us.

A: In transplant medicine (for conditions such as cancer or blood disorders), treatments are much more successful when more cells are used. Because using more cells generally means better treatment outcomes, treating physicians usually prefer to have an entire cord blood unit available for use in a single patient.

In regenerative medicine, treatments are still being investigated in clinical trials, so we don’t have a good estimate yet of how many cells are ideal, or how the doses should be administered. Therefore, CBR generally releases the entire cord blood unit to the treatment facility to be used by a single recipient. In certain cases, the treating physician may use a portion of the unit and re-freeze the remainder of the unit in a local cryogenic dewar, in order to provide the patient with multiple stem cell infusions at different time intervals. In some situations, a part of the unit may be retained at CBR for future use.Ongoing research is also evaluating ways to increase the number of stem cells in a cord blood unit by growing the cells in a laboratory before they are used for a patient treatment. This technology is called “ex vivo expansion”. CBR stores all cord blood units in multi-compartment containers so that just a portion of the cord blood could be easily removed and expanded if this technology becomes available, potentially giving enough cells for use in multiple treatments.

Q: We want to wait to cut the cord until it finishes pulsating. Will it still be possible to bank cord blood if we do this?

A: Yes, it is possible to bank cord blood after delaying umbilical cord clamping.

Q: What contingency plans does the registry have if it were to go out of business?

A: The best contingency plan is careful management that protects the company’s future. CBR's financial stability is unparalleled in this industry. Since CBR began in 1992, over 17 cord blood banks have opened and failed. CBR has been profitable since 1999 and has continued to build financial stability.

Furthermore, our continued investment in the best technology and our state-of-the-art lab demonstrates our commitment to being here for families in the future. Because of our size and track record, CBR has the financial infrastructure to continually invest in our business and maintain our samples in storage so that they are available when they are needed.

Q: Is what the reviewer said about CBR above true? Do other registries have similar policies?

A: When a client closes their account and specifically requests destruction of their stem cell unit, CBR’s policy is as follows:

  1. CBR lab pulls the unit, disposes as medical waste and the client will not be charged OR
  2. CBR client can request a letter certifying that the destruction took place for a charge of $150 OR
  3. CBR client can request the unit to be transferred to a 3rd party for destruction in which case there is a larger fee for certification and transportation. This is rare and handled on a case-by-case basis.

Q: What else should we know about the advantages of banking with a specific registry?

A: CBR (Cord Blood Registry) is the world's largest and most experienced stem cell bank. We have spent the past 20 years driving innovation in cord blood stem cell collection and storage and are entrusted by parents with storing more than 500,000 cord blood and cord tissue units. Moreover, CBR was the first bank to offer families in the U.S. cord tissue storage, which may help repair the body in different ways.

CBR is the only family newborn stem cell bank to have established FDA-regulated trials and is connecting client families to more potential treatments. As the industry leader in this initiative, CBR continues to focus on advancing the clinical applications of newborn stem cells and breaking new ground in regenerative medicine. Cord blood stem cells are currently being evaluated in a series of clinical trials as potential treatment for autism, cerebral palsy, traumatic brain injury and pediatric stroke.

Finally, I’d like to add that I personally banked my children with CBR before becoming involved with the company. I’m reassured by the fact that their stem cells are available in the event they need them.

Geoffrey Crouse

President & CEO, CBR (Cord Blood Registry)

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Frankly
  • Frankly
  • 4 years ago
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Love it when a CEO steps up. All companies should do that.

CEO of Socialize. Entrepreneur & lifehacker in Silicon Valley. Hopeless travelaholic.
DROdio
  • DROdio
  • 4 years ago
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Geoffrey, thanks for the answers. Much appreciated. I'd love to get @Allen's thoughts on your answers. We're 50/50 right now on whether to bank privately, or bank publicly. It's an agonizing decision, because on the one hand, we don't know what we don't know about what the future holds. But on the other hand, if some of the stats that Allen uncovered hold true for us, then the value wouldn't be as high as we expected.

But regardless, I agree with @Frankly -- thank you so much for responding.

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Allen
  • Allen
  • 4 years ago
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Hi all,

Agreed - thanks to Geoffrey for taking the time to respond to your individual questions and concerns. It's commendable as well as helpful.

As for whether it makes sense to bank cord blood for an individual, for us it reduced to a calculation of one's risk of needing the cells and the expense of maintaining them in a bank relative to anticipated income. If for instance the expense is trivial relative to your incomes, then it probably doesn't matter. However, if it's a sufficient expense to impact your budget (this was the case for us) then the questions are:

1) are the cells viable and safe?

2) will you ever need to use the cells? and

3) if you do need to use the cells, will they be effective?

Geoffrey did a nice job addressing question 1, although it would also be good to know what the numbers are on the routine testing he summarized. for instance, what variability in temperature is observed and how frequently the sterility tests (are these CFU assays?) come back positive.

Question 2 is a bit trickier, but not unapproachable. For instance, what diseases are currently treatable with stem cells? What diseases are in trials for autologous stem cell treatment? What are all known diseases that we suspect/hope could be treated with stem cells? Here I'd start making a table: disease, known frequency of occurrence, rank according to "treatability" with stem cells. Assuming the diseases are independent, add up the probability of each occurring as a gross first estimate of your maximal risk. Luckily, you don't need to stop there. Many of these diseases/disorders will have associated markers, meaning that in the normal course of genetic screening you will have ruled some or most of them out. And possibly for all of them, you can have yourselves tested for DNA sequence markers. btw, this might be cheaper than banking cord blood.

Geoffrey also got at question 3 in the sense that they do enough tests for cell viability to feel confident in their engraftment guarantee. However, cell viability and activity aren't sufficient to answer this question; presumably many of the treatments for which we hope cord blood will be useful remain in development or have yet to be conceived. My guess is that there are too many undetermined variables to even begin guessing. At this point, it gets back to what I said earlier: if it's a trivial expense and it makes you feel better, go for it. Otherwise, there's not really enough information to make any intelligent guesses about whether these cells will actually make a difference in your child's life.

Geoffrey: does your company maintain any data on how many diseases have been *successfully* treated by banked cells? I'd be interested in not only raw numbers but also percentages of banked samples that ever get used.

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Gcrouse
  • Gcrouse
  • 4 years ago
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CBR keeps an active list of how many diseases have been treated by newborn stem cells here: http://www.cordblood.com/en/best-cord-blood-bank/~/media/Files/PDFs/CellTherapy_Experience.pdf. This is the CBR Stem Cell Therapy Experience. CBR looks at treatments in three categories: Clinical trials in regenerative medicine, experimental therapies and transplant medicine of which over 80 diseases have known cures using stem cell infusions.

Over 260 clients have had stem cell therapy infusions. At CBR, we have released more newborn stem cell units for treatments over the last 4 years than we did in our first 16 years. And there has been a 3x increase in units released in the last 2 years. The recent increase in treatments is driven by the continued and rapidly moving research in applying these cells against various forms of neurological damage and autoimmune disease.

Click the links below to hear from some of our infusion clients recently in the news:

Grace

6 year old Grace received an infusion of her stem cells after suffering a brain injury as a result of being left without oxygen during a surgical procedure. Grace’s mom, Olivia, had this to say about her improvements after the infusion: "She used to be able to walk a little bit but couldn't stand still without reflexes to catch herself and would fall on her face. Now she can climb stairs by herself," says Olivia. "What we've seen so far is remarkable and life changing for her. Her level of joy has increased. It's beautiful to see her empowered and so strong."

Her story was featured as the cover story of Pasadena Weekly this month:

http://www.pasadenaweekly.com/cms/story/detail/a_total_miracle/12518/

Drew

12 year old Drew has cerebral palsy and participated in the CP trial at Medical College of Georgia. Drew’s physical therapist, Kathleen Lewandowski, said she almost can’t believe her eyes at progress he’s made after participating in the trial: “For us, we were thrilled if he held his head up for five seconds, 10 seconds, 30 seconds, if he could track something consistently and for him to sit, I mean, it’s a miracle. I’ve been a therapist for 10 years and that doesn’t happen,” Lewandowski said.

His story was featured on CBS Detroit broadcast news:

http://detroit.cbslocal.com/2013/10/25/metro-detroit-boy-a-living-miracle-after-stem-cell-treatment-for-cerebral-palsy/

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