EBB 346 – Uncovering the Facts about Private Cord Blood Banking with Journalist Sarah Kliff

• Read “Promised Cures, Tainted Cells” here
• Check out the American Academy of Pediatrics recommendations on cord blood banking here

Join us at the EBB Conference (virtually) this March by registering here! You can also see if the EBB Pocket Guide to Newborn Procedures is in stock here. 

For more information about Evidence Based Birth® and a crash course on evidence based care, visit www.ebbirth.com. Follow us on Instagram, YouTube, and TikTok! Ready to learn more? Grab an EBB Podcast Listening Guide or read Dr. Dekker’s book, “Babies Are Not Pizzas: They’re Born, Not Delivered!” If you want to get involved at EBB, join our Professional membership (scholarship options available) and get on the wait list for our EBB Instructor program. Find an EBB Instructor here, and click here to learn more about the EBB Childbirth Class.

Dr. Rebecca Dekker – 00:00:00:

Hi, everyone. On today’s podcast, we’re going to talk with journalist Sarah Kliff about her investigative reporting on cord blood banking. Welcome to the Evidence Based Birth® Podcast. My name is Rebecca Dekker, and I’m a nurse with my PhD and the founder of Evidence Based Birth®. Join me each week as we work together to get evidence-based information into the hands of families and professionals around the world. As a reminder, this information is not medical advice. See ebbirth.com/disclaimer for more details. Hi everyone, and welcome to today’s episode of the Evidence Based Birth® Podcast. Before we get started with this episode all about cord blood banking I have two announcements for you. First, if you haven’t registered for the 2025 virtual EBB conference yet, I highly encourage you to get your ticket soon. Today is the last day to register at the early bird rate, plus you’ll get access to an exclusive post-conference Q&A with Jen Kamel of VBAC Facts about all things vaginal birth after cesarean. Then next week Wednesday February 19, is the last day to get early bird registration before ticket prices go up. If you want to learn more about our speakers and topics or if you know you’re ready to grab your ticket and join us, just head over to ebbirth.com/conference and register today. Also on today’s podcast we are so excited to be covering another topic related to newborn health. Our expert today is going to be talking with us about cord blood banking, which is something that I looked into the research on when I was writing the Evidence Based Birth® pocket guide to newborn procedures. And that brings me to my second announcement and that is we have a limited number of physical laminated pocket guides that will be in stock on Valentine’s Day at ebbirth.com/shop. We sold out of all of our physical pocket guides last November including all of the pocket guides related to newborn procedures, labor induction, comfort measures, and interventions, and so this is our first restock of 2025. If you want a pocket guide to newborn procedures or one of the other topics, just go to ebbirth.com/shop to check out the pocket guides and add one to your birth toolkit while they are still in stock. 

And now, I’d like to introduce our featured expert for today’s podcast. Sarah Kliff is an investigative reporter with The New York Times where she covers the American healthcare system. Many of Sarah’s stories have explored topics related to childbirth, including cord blood banking, the maternal mortality crisis, and prenatal genetic testing. Sarah lives in Washington, DC, with her family. In 2024, Sarah and her colleague Azeen Ghorayshi published an article called “Promised Cures, Tainted Cells: How Cord Blood Banks Mislead Parents”, which we’re going to be talking about on the podcast today. Sarah, welcome to the Evidence Based Birth® Podcast.

Sarah Kliff – 00:01:18:

Yep. Thank you for having me.

Dr. Rebecca Dekker – 00:01:20:

I’m so excited to talk with you. I told our podcast team the day I read your article is like, we have to interview her if she’ll come on the podcast because, I was actually working on a project, a new Pocket Guide we’re publishing called the Evidence to Newborn Procedures. And I was researching cord blood banking on the day your article came out. So it was a really interesting coincidence. And I just loved reading your investigative report with you and your that you and your colleague printed. And you also had like a shorter article kind of explaining the basics. So can you start off by just sort of introducing yourself and then telling us a little bit about what is cord blood banking and what got you interested in this subject?

Sarah Kliff – 00:02:00:

Sure. Yeah. So like you said, I’m an investigative reporter at The New York Times. I write about health care and I’m particularly interested in childbirth. As you know, as I’m sure your listeners know, there’s just so. It’s a lot of people’s first introduction to like a major medical event. And there’s just so many things that are not evidence based. And really, I find worth looking into. Cord blood banking is when you have a baby, often you’re OB/GYN or somewhere in the process, you’ll get a little pamphlet about saving a little bit of your baby’s cord blood. It’s a really simple procedure. The OB/GYN who’s delivering, puts a needle into the umbilical cord. They draw out some of the stem cells. It’s frozen and shipped off to be stored for the one day you might need it, which is essentially kind of the pitch the companies doing this cord blood banking make. I vaguely remember hearing it. I have two kids, who are two and six. I kind of remember getting that pamphlet at some point. I didn’t think that much about it until… I was actually doing some reporting on some other topics in reproductive health related to fertility clinics. And while I was doing that research, I’d written a short story about a company that makes some IVF related products. And someone I reached out to said, hey, we actually also own a really big cord blood bank, have you thought about looking into cord blood banking? Because I think there’s a lot of problems there. And they pointed me to a recent FDA inspection of that facility. And that is basically what led me to writing this story.

Dr. Rebecca Dekker – 00:03:34:

Oh, wow. Yeah, I had a similar introduction, you know, got the pamphlets at my prenatal appointments, probably my very first prenatal appointment with my first child. And this was like 17 years ago. I remember thinking, well, there’s no way I could afford that. So I didn’t even consider it. But I also kind of being a nurse and a medical professional, I knew that the situations where that would be necessary were incredibly rare. So it’s like not going to spend like from my perspective, I’m not going to spend the money for something that I almost would never ever need. So how many parents use cord blood banking? Like, is it really common? Or is it just a very small minority?

Sarah Kliff – 00:04:11:

It’s, it is a small minority, but a decent number of people when you add up over the years who have done it. So we estimated about 2 million people are paying to store their cord blood somewhere.

Dr. Rebecca Dekker – 00:04:21:

But currently?

Sarah Kliff – 00:04:22:

Currently. So that’s a lot of accumulated cord blood. But it seems to be growing a little bit. One thing we found is that the biggest cord blood registry, their inventory has doubled over the past decade from about 500,000 samples stored in 2014 to over a million today. So it’s certainly not most parents, but it’s also a decent number of people who are paying both to collect it and then year after year you pay a storage fee to hang on to it.

Dr. Rebecca Dekker – 00:04:52:

Okay. And so that’s private cord blood banking we’re talking about, I’m assuming.

Sarah Kliff – 00:04:55:

Yes.

Dr. Rebecca Dekker – 00:04:56:

What’s the difference between a private cord blood bank and a public cord blood bank?

Sarah Kliff – 00:05:00:

Yes, that’s a great question. So private cord blood banks are where you pay to store your cord blood, the stem cells in your cord blood for your own potential personal use in the future. Public cord blood banking is donating your cord blood to this network. You could think of them like blood banks, essentially, for stem cells. They’re public. They hang on to stem cells. If someone might need a transplant one day, their oncologist can go into the network and see if there’s a good match out there. So in that case, you don’t pay any money, but you also don’t have a guarantee of being able to use those cells. Those cells are essentially donated for the public good.

Dr. Rebecca Dekker – 00:05:35:

Okay. So it’s similar to blood donation or plasma donation. It goes into a bank. And then it’s my understanding, too, that can be really helpful for people who are from minority populations who maybe have trouble finding a stem cell match. There might be benefits for being able to access that.

Sarah Kliff – 00:05:51:

Yeah, there might be. Although one of the things that surprised me in this reporting is that just overall, doctors are using cord blood a lot less than they used to a decade ago. That there are some new technologies that were developed around 2008 or so that make it easier for the patient like the one you’re talking about to get a transplant from someone who’s not quite as closely matched. Basically, the big medical breakthrough was figuring out this cocktail of drugs that could help them not reject that match, even though it wasn’t exactly perfect. So one thing you see both with the privately banked cord blood, the publicly banked cord blood, it’s just being used a lot, lot less than it was a decade ago. The medical utility has just kind of plummeted for a good reason, for essentially being able to figure out how to use stem cells that are found in blood rather than the stem cells found in cord blood to get equally good medical outcomes for people who need them.

Dr. Rebecca Dekker – 00:06:46:

That strikes me as like a really big, important point.

Sarah Kliff – 00:06:49:

Yeah.

Dr. Rebecca Dekker – 00:06:49:

That the entire- medical treatments for things like, say you have leukemia, you need a stem cell transplant. So you’re saying instead of going to a cord blood bank to get stem cells, they can harvest those stem cells from someone’s blood? And that’s a match for you?

Sarah Kliff – 00:07:06:

Yeah, exactly. And that’s a big, so there’s basically, I didn’t fully understand this when I went into this reporting. There are basically three places you can get stem cells. You can get them from peripheral blood that just circulates in your body. You can get them from an umbilical cord, which is the cord blood. You can also get them from bone marrow. For the past decade or so, the vastly preferred source of stem cells is from just the blood that circulates in your body. It’s pretty expensive to store cord blood. You kind of have to pay for. It just sit in liquid nitrogen for years and years and years. Whereas with peripheral blood, you know, you can it’s it’s definitely more of a process than just making a blood donation. But you can you can get it from a relative. It doesn’t have to be stored.

Dr. Rebecca Dekker – 00:07:53:

And it doesn’t have to be a perfect match anymore.

Sarah Kliff – 00:07:55:

It does not have to be a perfect match. This was a big breakthrough from researchers at Johns Hopkins University around 2008. They figured out a way to use the right anti-rejection drug. So it does not have to be a perfect match. And that really opens up the possibility of using the stem cells you can just get from somebody else’s blood.

Dr. Rebecca Dekker – 00:08:13:

Okay, so this really strikes me as like a huge point. In the last 10 years, we’ve seen all these advances where cord blood isn’t needed. But at the same time, these cord blood companies are ramping up their marketing. Can you tell us a little bit about some of the promises or the marketing like slogans or things like that that they’re using to kind of attract people to paying for it?

Sarah Kliff – 00:08:32:

Yeah, some of the things you see really repeated is the idea this is an investment in your child’s future. You know, they talk about a healthier tomorrow, is a phrase we saw show up in a lot of the marketing, the idea that there’s an unknown future. And one day you might want to have these cells at the ready if your child got seriously ill. One thing we saw repeated again and again is this claim that cord blood could treat 80 different conditions. And that’s a reason there’s so many of these conditions.

Dr. Rebecca Dekker – 00:09:02:

80 conditions sounds like a lot of potential uses for cord blood. Is that really true?

Sarah Kliff – 00:09:08:

It took us a while to actually find the list of 80 conditions. One thing we saw again and again was the cord blood banks would say 80 conditions, and then we would ask them for a list and not get an answer. We finally did from cord blood registry, the largest cord blood bank in the U.S. They sent it us to a study as a source, which cited another study, which cited a list that had been put together by the Parents Guide to Cord Blood Foundation, which is a nonprofit that does work in the cord blood space. You know, I reached out to the woman who made the list, and she basically said this is hype. She thought it was misleading the way the cord blood companies were using this list for two reasons. One is that a lot of these conditions, while they have this long list, they’re exceedingly rare. You know, maybe a handful of cases each year. A long list of things your child is very, very unlikely to develop. The other thing, you know, she felt was misleading about it, kind of goes back to what we were just talking about, is that these aren’t diseases that can only be treated by cord blood. These are diseases where stem cells are used in treatment. And again, you can get those stem cells from other places, you can get them from blood, you know, from a living relative, from a donor. The marketing, you know, it made it seem like you have this one opportunity when your baby’s born. This is your only moment to collect the umbilical cord blood. And while that technically is true, I think it’s misleading because there are other opportunities to get stem cells. If you needed your child’s stem cells at any point, you could collect them from the child themselves, you know, while they are living.

Dr. Rebecca Dekker – 00:10:38:

I’ve run into that in research before, too, where one person cites another person cites another person. You’re like tracing back to find. But I’m like, it was something I had really good professors. It sounds like you had amazing teachers. You always find the primary, the original source, you know, who originally said this because they should have evidence to back it up, but it sound-

Sarah Kliff – 00:10:56:

Yeah. And on the websites, they’re all like linking towards each other. And it’s kind of this like web where and that always I feel like is a bit of a red flag to me. Like something might be up here if nobody actually has the original source.

Dr. Rebecca Dekker – 00:11:09:

I pulled up a large, cord blood, private cord blood bank website right now called cryo-cell.com. And it says, it explains what stem cells are. It says cord blood stem cells are currently used to treat nearly 80 diseases. So again, they use that 80 number. Over 50,000 transplants worldwide have been performed using stem cells from umbilical cord blood. More opportunities are increasing. It can cross the blood-brain barrier and reduce inflammation, which could treat conditions that have been untreatable. And that it can not only safeguard your specific child’s future, but could be used to treat siblings, parents, and other close relatives.

Sarah Kliff – 00:11:46:

Yeah, a few things jump out at me in that. One, that 50,000 figure, I think it’s important to note the vast majority of those are using publicly banked cord blood, not privately banked cord blood. The number of cord blood transplants done with privately banked cord blood are exceedingly rare. I think we’re down to, I’d have to look back at my story for the exact numbers, but about a dozen or so a year. You know, that mention of crossing the blood-brain barrier, that sounds like one of the claims that’s made based on clinical trials. So these are things they’re experimenting with, but things, you know, that it’s not necessarily…

Dr. Rebecca Dekker – 00:12:20:

It’s not currently being used for any medical treatment.

Sarah Kliff – 00:12:23:

Yeah. Yeah. So that’s like another thing that kind of jumps out at me in that little piece of marketing.

Dr. Rebecca Dekker – 00:12:29:

I noticed that as well, a lot of the things they talked about. They might be scientists studying some of these things in very specific, very small research studies, but it’s not like available. Like you can’t go to your doctor and be like, can you give me this so that to reduce inflammation?

Sarah Kliff – 00:12:45:

Yeah, we’ve even seen that a few cord blood banks advertise it can be used to treat diabetes or hearing loss. And then when you kind of dig into, okay, what’s your evidence for that? It’s sometimes mouse studies, sometimes very small studies with, you know, 10 or so children. People are exploring a lot of things all the time, but there are very… Few proven, you know, FDA approved treatments using cord blood right now.

Dr. Rebecca Dekker – 00:13:12:

And then some of the other things I’m just seeing, just if you go to the website and look, it says like protecting what matters most.

Sarah Kliff – 00:13:18:

Yep.

Dr. Rebecca Dekker – 00:13:18:

Your baby’s health safety net. This is a once in a lifetime chance to safeguard your child’s health affordably. What are your thoughts about this?

Sarah Kliff – 00:13:27:

Yeah. I mean, that once in a lifetime marketing, again, I think is pretty misleading because if you did need your child’s own stem cells, you have another chance to get them because you’re going to have that child there. And it is, I mean, it is a little bit invasive. They’re going to have to be, take some medications to increase their stem cell production. They’re going to have to be hooked up to, you know, a machine that pulls the stem cells out. It is technically true. It’s your only chance to get the umbilical cord cells, but it is not true. It’s your only chance to get these stem cells. These stem cells are going to be with your child their entire life.

Dr. Rebecca Dekker – 00:14:03:

I also saw one company you could pay extra to get to for them to cryo freeze your placenta. Have you heard about that?

Sarah Kliff – 00:14:11:

You know, I haven’t seen placenta. I’ve seen cord tissue. And that’s another one where there’s currently, there’s some trials, but with the cord blood, with the stem cells, there are clinical uses. The cord blood tissue, everything is currently investigational and experimental. Tissue is another one I’ve seen. And often you see it as like a kind of roll up package deal where it’s like if you do, if you store more things, you get a bit of a discount. So the idea, like, why not add it on? Placenta is a bit new to me, but it kind of reminds me of the core tissue, like another. Item they can hang on to from your birth and charge you for storage.

Dr. Rebecca Dekker – 00:14:47:

So is it possible a parent, like if their child was enrolled in a clinical trial, say for autism or cerebral palsy or something like that, where they have a condition and there’s this experimental treatment, are you seeing parents be able to use their cord blood in those clinical trials?

Sarah Kliff – 00:15:07:

Sometimes, but not always. So we talk to the researchers who run those trials. Most of them are based at Duke in the two areas you mentioned, autism and cerebral palsy. And what they told us is about half the time, the cord blood that parents have paid to bank is unusable. And there’s usually two main reasons why it’s unusable. Either there weren’t enough stem cells, the count was just too low for it to be clinically useful, or it’s contaminated, that there’s some kind of bacteria that’s been growing in it. And those are the two reasons why, about half the cord blood that these researchers at Duke review, ends up being unusable. One other thing I think is interesting about those studies, the cerebral palsy study in particular is about to move into phase three. And that will only be using publicly banked cord blood. The basically government bodies that oversee clinical trials, they wanted more standardization in the storage process for this larger phase three trial. So parents will not be able to use privately banked cord blood in kind of the largest of the cord blood studies that are coming up.

Dr. Rebecca Dekker – 00:16:13:

Which makes sense if like half of the privately banked blood that people were requesting was contaminated. That also seems like a huge thing that parents need to know.

Sarah Kliff – 00:16:23:

Yeah. So not half contaminated, half low volume or half, but in any half low volume or-

Dr. Rebecca Dekker – 00:16:29:

Half were unusable, so?

Sarah Kliff – 00:16:30:

For some sort of reason. I mean, remember, it’s very, very few people who try and even withdraw their cord blood. The vast majority of people pay for storage with never using it. And the cord blood companies, kind of discuss it as an insurance policy. You just want it to sit there in case you need it.

Dr. Rebecca Dekker – 00:16:46:

Oh, they call it like this is an insurance policy for your child.

Sarah Kliff – 00:16:49:

Yeah, we’ve seen some. Yeah. Sometimes we’ve seen like language kind of comparing it to insurance. So it’s already a very small pool of people who ever even find out what is in their stored sample because most people just never.

Dr. Rebecca Dekker – 00:17:02:

It gets sent away and you don’t know.

Sarah Kliff – 00:17:05:

It just sits in a tank of liquid nitrogen for a very, very long time.

Dr. Rebecca Dekker – 00:17:09:

And then when do they eventually dispose of it?

Sarah Kliff – 00:17:12:

You know, it’s actually something families wrestle with, you know, especially the ones who have paid to store it. Some, you know, when their kid turns 18. But there’s… some people keep paying for it afterwards. One of the things that, this didn’t make it into our story, but one of the… challenges that parents are wrestling with is some of the companies keep increasing their storage fees. So, you know, you’ve been storing for a decade and then they say, okay, now it’s $50 more this year and then it’s $25 more the next year. And parents kind of wrestle with like, well, I’ve stored it so long, maybe I should keep storing it. It’s getting more and more affordable. There’s really no cutoff, we know, of like how long it can be stored for, which kind of lets the cord blood companies make the pitch that, you know, why not keep storing it if you’ve paid for it this long?

Dr. Rebecca Dekker – 00:17:59:

Why not? Did you talk with any families that this happened to where they had paid to store their cord blood and it was unusable?

Sarah Kliff – 00:18:09:

Yeah, I talked to a lot of them and a lot of them are in Facebook groups together, kind of focused on stem cell treatment for either autism or cerebral palsy. And, you know, there’s one family that kind of sticks out, this family, the Edwards in Florida, who they had banked their, I believe it was, they banked one of their son’s cord blood and then had another son develop cerebral palsy. And they were like, oh, great. Like this is the use case. You know, we saved it for the what if, and we have the what if. They spent about $3,000 banking that cord blood. But when they went to pull the sample, they found out it was contaminated with E. Coli and was unusable. And one of the things that, you know, that family was pretty upset about. Was that the testing for contamination had happened right when the sample had been stored. The company knew from the get-go that it was contaminated. They kept paying for multiple years of storage and only found out it was contaminated when they requested the sample. But even after that experience, they kind of figured, okay, this was bad luck. They had another baby on the way, so they decided to bank that baby’s cord blood. They paid $650 to collect the next baby’s cord blood. That sample was also unusable. Because, it didn’t have enough cells. And I think their experience just really showed some of the limitations. And a lot of these… Families, they just felt crushed by the development. You know, they felt like they were kind of holding on to this hope. They felt like they’d done the right thing. Some of them, you know, had an older child with cerebral palsy or autism. And when they’re having their new baby, thought, oh, great, you know, I’m going to save this cord blood and use it to treat my older child. And we’re just really upset to find out that, you know, it was unusable.

Dr. Rebecca Dekker – 00:19:58:

Did you talk with anyone who was able to successfully do a treatment with their banked cord blood?

Sarah Kliff – 00:20:03:

Yeah, I talked to some families who were able to do treatment with cord blood. Some of them felt like their children had gains. Other ones didn’t. If you look at the phase two research, the cerebral palsy trial did meet some of the endpoints. It showed some improvements in the condition. The autism trials have had a little bit less success in showing kind of clinically significant change. But there are certainly some parents who feel like they’ve had some very good outcomes using the cord blood that they stored. And, you know, the cord blood companies obviously will point to that and discuss that on a lot of their marketing materials and websites.

Dr. Rebecca Dekker – 00:20:39:

Like they like to share the success stories.

Sarah Kliff – 00:20:42:

Yeah. Yeah.

Dr. Rebecca Dekker – 00:20:44:

We haven’t really dug into the cost. You’ve thrown a few numbers out there. What is the range in terms of how much does it cost for the initial collection and then the storage?

Sarah Kliff – 00:20:54:

Yeah, so the initial collection, it varies from company to company. It varies if you get like a lot of them have coupons floating around there, or it also varies if you’re willing to store multiple things. It’s usually around like $500 or so for the initial storage of cord blood, and then a few hundred dollars for paying fees each year to keep storing your cord blood. So I’d say most families who do this end up, you know, in total spending a few thousand dollars on cord blood storage.

Dr. Rebecca Dekker – 00:21:22:

And I’ve seen some startups, though, charging more, which I thought was interesting. Like I said, adding in more add-ons, like you mentioned, the cord tissue.

Sarah Kliff – 00:21:32:

Yeah, the cord tissue. Some of them like offer certain, I didn’t look super deeply into this, but they offered like genetic testing of your cord blood that might tell you something about your child’s future health. You certainly see a lot of add-ons. Cord blood banking is the core product. And then these other things that get tacked onto it.

Dr. Rebecca Dekker – 00:21:52:

Yeah. And I saw like, for example, one startup called Anya Health. Their prices were really high. I was kind of shocked. It was like $49 a month if you commit to 20 years.

Sarah Kliff – 00:22:07:

Yeah, and I think their idea is that $49 looks small when you think of it on a month. But then if you multiply that by the 20 years of 12 months, it starts getting quite large. Yeah.

Dr. Rebecca Dekker – 00:22:17:

And they’ll store it for your child’s life for $5,999. Yeah.

Sarah Kliff – 00:22:23:

Yeah. So it’s like, you know, it’s not nothing. And, you know, one thing that kind of, you know, surprised me when I would ask cord book companies about these fees, for some reason, this kept multiple people would respond, well, you know, people spend that much on a luxury handbag. So why not spend it on your child’s health? And it just felt like, um, you might get more use out of a luxury handbag than you would out of, um, you know, that felt like an odd comparison and kind of, um-

Dr. Rebecca Dekker – 00:22:51:

And it’s also people who are having their first baby who I imagine are often the one they don’t typically have a lot of money. Like that is not. Usually it’s you’re at an age and a time when you’re still trying to make ends meet. And there’s all these expenses with having a child that can be very stressful.

Sarah Kliff – 00:23:08:

But you’re also like, like I remember having my first kid and you’re so vulnerable and you’re a great marketing target because you really want to do what’s best, right? Like you’re trying to get the right stroller and you’re reading all the sleep safety and you’re. Trying to set your kid up for a wonderful future. And, you know, I think the pitch that they make really tries to, you know, I talked to some of the former sales representatives and some of them just, they felt a little queasy pitching this product that they didn’t feel had much evidence and felt like they were like preying on first time parents fears, you know, in order to close their sales.

Dr. Rebecca Dekker – 00:23:46:

Yeah, the fears and anxieties and then also kind of the lack of knowledge.

Sarah Kliff – 00:23:49:

Yes.

Dr. Rebecca Dekker – 00:23:51:

I mean, I felt like I had a little bit of an advantage being a nurse and being like, I never see this used. So why would I do this? But a lot of people think, oh, this is like a thing I’m supposed to do.

Sarah Kliff – 00:24:01:

Yeah. I mean, I remember feeling like a teeny tiny bit guilty not buying it, thinking like, yeah, you know, because like I looked at the brochures. This was, you know, six years ago before, you know, I ever looked into it seriously. But I kind of looked at the brochures and I said, I don’t think we’ll use that. But there was like a little twinge of guilt there for, you know, not investing in something, you know, for this baby that I cared so much about.

Dr. Rebecca Dekker – 00:24:24:

Yeah, that’s true. And one thing that I learned in reading more about cord blood banking is that many states have laws that require parents to be given information about it.

Sarah Kliff – 00:24:34:

Yeah. Yeah. Which is kind of interesting. There was this movement in like the early 2000s when before all these developments, the anti-rejection drugs to really build up the network of public cord blood banking. And-

Dr. Rebecca Dekker – 00:24:47:

So they were trying to get the info out about the public cord, the donations.

Sarah Kliff – 00:24:51:

Yeah. And I think all of it just ends up kind of getting talked about in one fell swoop. Some of the state laws also require, you know, educating on both public and private cord blood banking. So I think there was this well-intentioned effort to kind of let people know about donating their cord blood. But it also might have unintentionally kind of fueled the rise of private cord blood banking as well.

Dr. Rebecca Dekker – 00:25:16:

Another thing that I learned from, you know, your readings and some of the other research is the whole fact that this private cord blood banking is kind of like an unregulated area. Can you talk a little bit about that?

Sarah Kliff – 00:25:26:

Yeah. So it’s in a few ways. One of the things that makes it different from most things that happen in an OB/GYN’s office is it’s not covered by insurance. There’s all these rules about kickbacks and payments that cover any sort of product, you know, like. Someone, a pharmaceutical company, a medical device company, they cannot pay your doctor money to use a certain product. There’s strict anti-kickback laws about that that cover anything that insurance, private or public, is paying for. Those don’t really exist in this space. There’s very little oversight of some of the kind of. Fees that are paid to doctors for collecting cord blood. Then there’s also the storage side, which is overseen by the FDA. But a lot of the experts we talked to felt like it was pretty lax, you know, in terms of not having many standards for how to store this to make sure it does not get contaminated and become unusable in the future.

Dr. Rebecca Dekker – 00:26:22:

When I went on the websites for the private cord blood banks, they were, some of them were just saying like, you just stick it in this like box and mail it back to us. And I’m thinking like, is that what you’re supposed to do? Like unrefrigerated? I was a little confused by kind of the lax mailing of it back.

Sarah Kliff – 00:26:40:

There was an FDA inspection of cord blood registries facility in Tucson, Arizona, at the beginning of this year, which found multiple deficiencies in this space. One of the things they found was evidence of bacteria growing in the area where the cord blood is processed and kind of taken out of those boxes you’re talking about. They found that a number of samples were coming in without their temperature being logged, which meant, you know, the cord blood could have sat out in the sun or sat out in the cold at some point. In the shipping process. And that could have, you know, rendered particularly, you know, heat could have just rendered these cells unusable. There are other problems they found with leaky bags. With record keeping. And so this stuff does… Often get noticed when the FDA comes to inspect, but those inspections are every few years and the problems can kind of continue for a while unnoticed.

Dr. Rebecca Dekker – 00:27:35:

So do doctors get paid for collecting the cord blood for private or public?

Sarah Kliff – 00:27:42:

Yes, definitely for private cord blood banks. And we talked to a number of doctors, former sales representatives who all told us this was just kind of standard practice across the industry. The payments seem to range from about $150 to $750 for, you know, what is essentially one or two minutes of work with what the obstetrician has to do in this. Situation is basically after the baby is delivered, they put a needle into the umbilical cord. They’d pull out some cord blood and they put it into a tube. And that is the work that they are doing. We got a range of opinions about whether these fees influence provider behavior. We talked to some doctors who said, you know, yeah, the payments were high for the work being done, but they weren’t enough to influence the work that we do. We talked to sales representatives who said, yeah, there were some doctors who were quite motivated by the fees and it made it an easier pitch to kind of have them stock these kits in their storage room, knowing that there was kind of that fee associated with them. And we did have some doctors who say they felt uncomfortable. They were worried about violating ethical standards and they just stopped taking these fees. So I thought that was, you know, a bit telling that some obstetricians said, you know, these fees just make us too uncomfortable. We’re not even going to accept them. But that did surprise me. And I think it’s one thing that’s important for patients.

Dr. Rebecca Dekker – 00:29:06:

Because it’s like the only example I know of right now of like some kind of. Outside financial incentive to perform an intervention that ends up costing the patient a lot of money. Yeah.

Sarah Kliff – 00:29:18:

Well, mostly for most things, you know, it would be illegal. If your insurance is covering it, there’s a contract between your doctor and your insurance that they’re going to get paid X amount for doing this service. Cord blood collection exists in this kind of gray area where it’s in your doctor’s office. It seems pretty medical. It’s not covered by insurance. So there’s basically no oversight or rules about the cord blood companies compensating the doctors. So it’s typical stuff you see in pharmaceutical marketing. The reps, the sales reps will drop by the obstetrician’s offices. They’ll bring them lunch. They’ll give them a bit of a pitch. But then there’s this like other thing that’s happening in cord blood collecting of these fees that get paid when the doctor, you know, does collect cord blood.

Dr. Rebecca Dekker – 00:30:02:

And then what role, if any, does celebrity endorsement play in this whole industry?

Sarah Kliff – 00:30:08:

Yeah, it does play a role. So the most recent, I don’t know how major you consider it, but major endorsement of cord blood making was from Chrissy Teigen, you know, the supermodel with many, many Instagram followers, has I believe four children at this point and married to singer John Legend. She did a campaign with the Cord Blood Registry® a year or two ago where she posted on her Instagram. She went on the Kelly Clarkson show and we actually found they had submitted the Cord Blood Registry®, which produced this campaign, had submitted this marketing effort for an award where they mentioned that Chrissy Teigen… brought in 5,800 new customers and generated $6.6 million in revenue, suggesting that these celebrity endorsements do have an effect and they do matter and they do encourage people to look into cord blood banking.

Dr. Rebecca Dekker – 00:30:58:

That’s really fascinating. And did she disclose like she was being paid to do that?

Sarah Kliff – 00:31:03:

I think it was pretty clear. I mean, the cord blood registry marketing was everywhere. I think it had the little paid partnership-

Dr. Rebecca Dekker – 00:31:10:

Try having hashtag ad or something.

Sarah Kliff – 00:31:12:

Yeah. Yeah. I think like it was made pretty clear. And, you know, she does say repeatedly, I’m partnering with the Cord Blood Registry®, but also talks about why she feels like this is important to her as a mom and her family. So kind of talk about her personal story of endorsing this for her family.

Dr. Rebecca Dekker – 00:31:27:

Yeah, and the Cord Blood Registry® is a for-profit.

Sarah Kliff – 00:31:31:

Yes. It’s part of a larger medical device company called CooperSurgical, which purchased, it’s gone through a few different owners, but they’re the most recent purchaser of the Cord Blood Registry®.

Dr. Rebecca Dekker – 00:31:41:

I did want to point out another difference between private and public is that from what I read, the doctors don’t get paid for the public cord blood.

Sarah Kliff – 00:31:50:

Some of the public ones, they do provide a fee. It tends to be smaller. It’s a little, the public cord blood banks have found that they’ve struggled a little bit to, you know, keep up their supplies. So sometimes they do pay, sometimes they do pay fees, but they tend to be relatively modest.

Dr. Rebecca Dekker – 00:32:06:

Relatively smaller. I also saw something interesting where I saw a doula recommending cord blood and that really kind of, you know, made my ears pop up because usually you don’t see doulas promoting those kind of commercial enterprises. So I did a little digging and I found that some of the cord blood companies will provide kickbacks to like non-doctors.

Sarah Kliff – 00:32:26:

Interesting.

Dr. Rebecca Dekker – 00:32:27:

Yeah. So people who use their platform, to advertise, they’ll often get maybe one free year of storage or something like that.

Sarah Kliff – 00:32:34:

That was another thing. Actually, we found that obstetricians, they would often provide free storage when they had their own baby that the cord blood companies would let them store for free. I think one other way, kind of the, you kind of see this lack of regulation when I’m doing my research on kickbacks and payments, usually you can see the relationships between doctors and pharmaceutical companies pretty clearly. The federal government requires whenever a pharmaceutical company makes a payment to a doctor. You know, maybe they go to an educational event, maybe they go to a lunch, that payment is posted to a public website. And often when I’m doing my research, I go into that public website to see kind of the financial relationships between doctors and pharmaceutical or medical device companies. You can’t do that with cord blood. Again, because it is not covered by insurance.

Dr. Rebecca Dekker – 00:33:22:

It’s not regulated. Yeah.

Sarah Kliff – 00:33:23:

You can’t go look up your obstetrician and see how much money did they get from the various cord blood companies. That’s just not public. So that’s another way where, like you mentioned with this doula, that there’s less transparency in this particular space than there would be if you wanted to see, you know, how much they get from a, you know, gynecological device maker. You couldn’t see that with cord blood.

Dr. Rebecca Dekker – 00:33:48:

What other information do you think parents might want to be aware about, you know, when they’re you they’re making this decision if it’s even something they’re considering. We haven’t talked about delayed cord clamping. Like what, you know, for a lot of our listeners want to have delayed cord clamping. Is that possible with this?

Sarah Kliff – 00:34:05:

Yeah. You know, the banks advertise that it is. It’s not one of the claims I looked into very deeply, although I did hear some concerns that you’re going to run into the low cell count issue more often if you bank after doing delayed cord blood clamping. I don’t want to speak too far on that because that’s just not one of the issues that I got super deep into. But that is something that’s certainly coming up more now.

Dr. Rebecca Dekker – 00:34:32:

Like the longer you delay clamping the cord, the more the blood goes into your baby. And a lot of parents want the cord to be delayed the clamping until the cord is white and like not pulsating. So I would imagine there’s not very much left if you wait that long.

Sarah Kliff – 00:34:47:

I would guess so. You know, again, the cord blood companies, they claim that you can do delayed cord clamping and collect.

Dr. Rebecca Dekker – 00:34:55:

I’m on their website, so I was looking at the protocols and they said you could delay cord clamping up to 60 seconds, but that’s like the bare minimum for what is considered delayed cord clamping. So a lot of parents prefer three to five minutes. So it sounds like, I think there would be a one minute limit.

Sarah Kliff – 00:35:12:

And there’s just not going to be a ton of research into this space, unfortunately, which makes it kind of a hard decision to make without much evidence to go on.

Dr. Rebecca Dekker – 00:35:22:

Do you feel like this industry is going to keep growing? Like, has it been growing? Are you seeing new companies jump into the space, all kind of wanting to market to new parents?

Sarah Kliff – 00:35:31:

I think it’s going to just keep steadily, slowly growing. I don’t see a future where most of us are banking cord blood, but I think it’s going to keep growing despite the fact that cord blood has become less and less clinically useful over the past decade or so. You do see new companies. There’s the one you mentioned, Anja Health, which is backed by, I don’t know if I can pronounce his name correctly, but Serena Williams’ husband, the Reddit founder, Alexis Ohanian.

Dr. Rebecca Dekker – 00:35:58:

Oh, yeah. So it’s like a private equity firm.

Sarah Kliff – 00:36:00:

Yeah, it has some private equity backing. And one interesting thing about that company, we learned, is they’re actually renting space from a public cord blood bank that lately has not had as many samples coming in. So they’re using the storage of kind of this as there’s been less demand for publicly banked cord blood, they’re seeing some of their revenue dry up, the public banks. And we found in this situation that a public bank was renting its space to this private cord blood bank, kind of got a very… Millennial, almost like Warby Parker-ish, design to its website. And so that was kind of an interesting interplay between the private and public banking. But you certainly see new companies coming online, you do see some going out of business.

Dr. Rebecca Dekker – 00:36:45:

What happens if you’re banking your cord blood and the company goes out of business?

Sarah Kliff – 00:36:50:

Yeah. Often they, you know, sell to another company. So they get absorbed by a larger cord blood bank generally. But there is the possibility of, you know, you’re just kind of out of luck. And you do worry, you do wonder about like the transport of samples, if there could be challenges there. But I mean, I think one thing that made me think this area is going to keep growing is, so the biggest cord blood bank in the country, Cord Blood Registry®, it was purchased by CooperSurgical, which is a big medical device company in 2021 for $1.6 billion. And they were purchasing the cord blood registry, it was part of kind of this little group of other companies, a large sperm bank. But CooperSurgical attributed two thirds of that company’s value to umbilical storage. So a big medical device company, a few years ago, thought that this business was worth roughly a billion dollars, which makes you think that they see, they think it’s going to keep growing.

Dr. Rebecca Dekker – 00:37:48:

As somebody who also is in business, they see this as recurring revenue. It’s like the Netflix model, except at a higher, you know.

Sarah Kliff – 00:37:55:

Except with Netflix, you have to keep making a lot of new shows. And what works so well about this business model is most people never take anything out. Most people just pay the storage fees. So you have a lot more samples.

Dr. Rebecca Dekker – 00:38:09:

You never actually put your hands on the product, and you’re not receiving anything out of it all that time.

Sarah Kliff – 00:38:13:

Exactly. And the pitch is like, that’s an okay way to use this product, right? It’s insurance, it’s there if you need it, but hopefully you’re never going to need it.

Dr. Rebecca Dekker – 00:38:21:

Wow. What if parents are listening right now and they’re like, I feel like. I got duped or, you know, just like I wasn’t, I think one of the reasons people might feel duped is they weren’t given all of this information, right? They’re given the marketing materials, but they’re not given like the behind the scenes kind of facts about what’s going on.

Sarah Kliff – 00:38:40:

Right. And it’s like unreasonable to expect, you know, parents to try and find that information. This is my full-time job and it took me months to, you know, dig up all this stuff.

Dr. Rebecca Dekker – 00:38:50:

And your OB/GYNs aren’t necessarily giving you all the info either, right?

Sarah Kliff – 00:38:54:

Yeah, and your incentives might actually be a little misaligned with your OB/GYN because of, you know, the collection fees.

Dr. Rebecca Dekker – 00:39:01:

There’s a conflict of interest.

Sarah Kliff – 00:39:02:

There’s a bit of a conflict of interest there. One thing they can do immediately, and some readers did contact me about doing, is, you know, reaching out to their cord blood bank and asking for, you know, a report on is there any contamination or how many cells are there. Some of the cord blood banks will not provide that information proactively, but you can ask for it. So I did hear from some families who were doing that after reading our reporting. So that feels like one actual concrete step that someone.

Dr. Rebecca Dekker – 00:39:30:

So you mean like, give me the report from when you received my sample. I want to know if it was contaminated.

Sarah Kliff – 00:39:34:

Exactly. Exactly. Because a lot of people only get those reports when they try and join a clinical trial. Everybody I talked to was someone who, you know, learned that their cord blood was contaminated, only learned that when they tried to withdraw it.

Dr. Rebecca Dekker – 00:39:48:

Did they get refunds or like that seems some not only unethical, but fraudulent to keep charging these storage fees when they knew it’s-

Sarah Kliff – 00:39:55:

Some get refunds. Some didn’t. Some were really upset about that. I know one family was offered like 50 percent back, didn’t accept it because they felt like they were owed all of it back. So it seems to just vary from company to company.

Dr. Rebecca Dekker – 00:40:10:

But like literally some of these companies may, they run the report when they receive the sample. They see it’s contaminated or there’s not enough cells and they put it in storage anyways and start billing you.

Sarah Kliff – 00:40:20:

Yeah. Yeah. And, you know, like I’ve reviewed some emails that people with contaminated cord blood had with representatives of these companies. They will often, you know, say, well, look, birth isn’t a sterile process. Things can get in there. But that doesn’t really explain why families were never told. And, you know, these FDA inspection reports we reviewed suggested that it’s not just birth being an unsterile experience that is leading to contamination. There might be things going on within these processing facilities that matter too.

Dr. Rebecca Dekker – 00:40:52:

So I guess parents, you know, they’re asked to make this decision. Are you going to bank your cord blood or not, public or private? And it’s my understanding the public cord blood banking is only available at like certain hospitals around the United States.

Sarah Kliff – 00:41:05:

It’s often very difficult. I remember I actually tried, I have an almost three-year-old, and I tried to donate her cord blood. And I live in Washington, D.C., and there was not a single hospital in Washington, D.C., a relatively major metro area, that participates in public cord blood banking. Unlike private banking, which you can bring your kit, you can sign up for. You can’t really bring in a public banking kit if your hospital doesn’t participate in it. I don’t think you’re going to be able to donate.

Dr. Rebecca Dekker – 00:41:33:

And then the other decision is if you’ve already collected your core blood and it’s in storage, and then you can request the report, but some parents may also decide to just stop paying for the storage. That would be a hard decision though, I imagine, once you’ve already done all that work and paid all that.

Sarah Kliff – 00:41:49:

Yeah. You kind of have this sense of like, I’ve already paid for it. And so why not keep paying for it? I think it’s a… kind of personal decision about whether you think there’s potential value in the cells you’re storing or not.

Dr. Rebecca Dekker – 00:42:04:

What do you think is the number one takeaway from this whole report that you did?

Sarah Kliff – 00:42:08:

I think it’s always to bring some, I mean, this is probably just from being an investigative health care reporter, just to always, you know, feel okay asking questions about things doctors are recommending. And it can feel a little uncomfortable, you know, to question someone who’s providing your care. But I also think there’s just reason to ask questions about things that are being recommended, you know. If you’re comfortable, you know, asking your doctor, you know, are you getting paid a collection fee for, you know, when I bank my cord blood. One of the takeaways for me is when you see these big promises, you know, a healthier future, a once in a lifetime opportunity, an insurance policy to always look at them with a little skepticism and kind of, think. But at the same time, I’m very sympathetic to the marketing. Again, you know, I say I was someone before I did this reporting who felt a little guilty about not doing this. So it’s a tricky, I think, I don’t know, in the American healthcare system, we’re just put in often like tricky situations where we don’t have all the information.

Dr. Rebecca Dekker – 00:43:08:

Yeah.

Sarah Kliff – 00:43:09:

And it’s a lot.

Dr. Rebecca Dekker – 00:43:10:

Information is power. And so they’re asking you to make a decision with faulty information too, you know.

Sarah Kliff – 00:43:16:

Yeah, exactly.

Dr. Rebecca Dekker – 00:43:17:

Not giving you all the sides. I noticed that the American Academy of Pediatrics does not recommend private core blood banking, but they do recommend, they do support public core blood banking. That’s interesting. Yeah.

Sarah Kliff – 00:43:29:

And we interviewed a lot of, Azeen and I, my co-author, a lot of oncologists, pediatric oncologists, and routinely we’re told by all of them, you know, if this gives people any way to make this decision, none of them recommended privately banking core blood. We didn’t find a single one who regularly works with stem cells who recommended banking your cord blood privately. You know, we talked to one cancer expert at Memorial Sloan Kettering who kind of stuck with me, who he treats sickle cell anemia, which is a condition you can treat with stem cells. And he repeatedly said he’s seen families who come in, one of their children has sickle cell anemia, and they want to use the cord blood that they’ve stored. And he said, every time this happens, it’s just never enough volume. They always have to get some more stem cells from somewhere else. And some of these families, he said, you know, are a little bit crushed by this news. But I think it kind of just speaks to the often lack of value in the product that’s being paid to be stored.

Dr. Rebecca Dekker – 00:44:35:

That’s a good point. It’s also interesting you mentioned the oncologist not recommending it. Because I’d also read that often if a child has leukemia, they recommend against using the child’s own stem cells.

Sarah Kliff – 00:44:47:

You can’t actually use- Yeah, this surprised me too in the reporting that if your child has leukemia, you cannot use their own stem cells to treat them because they’re predisposed to be malignant in that way, essentially. So you would always, you know… what the cord blood companies would pitch is that, well, what if there’s a sibling? And if you store the sibling’s cord blood, you’d have a match. And that is true. But you also have that sibling again right there. And the sibling could be… a donor via blood donation, if needed, to treat. You know, their sister or brother. But yeah, that surprised me. I think a lot of us think about. Like vaguely stem cells and treating cancer and stem cell transplants. But generally, you cannot treat leukemia or any other blood cancers with that person’s own stem cells.

Dr. Rebecca Dekker – 00:45:35:

Yeah, they have to come from a donor. Wow. Sarah, I feel like people listening today, they’re going to just be like, mind’s blown, learn something new. People have been asking me about cord blood banking for ages now. And so I’m glad you came on and cleared the air. And I’m really thankful for your investigative work and the other pieces you’ve written as well. We’ll make sure to link to those in the show notes because they’re so well done. So Sarah, thank you so much for coming on the podcast.

Sarah Kliff – 00:45:59:

Thank you for having me.

Dr. Rebecca Dekker – 00:46:02:

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