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Fairy
07-13-2005, 10:55 AM
Hello! (warning: long post!)

I had my baby boy in September of last year and spent a really agonizing amount of time trying to choose the right place to bank my baby's umbillical cord blood (UCB). Awful experience due to the frightening lack of third party CONSUMER information. Info about cord blood banking itself is in wide abundance, as are ads from the leading vendors. Consumer info, like comparisons apples to apples, is woefully lacking and is, in fact, almost non-existent. At the time, there was really only one person who was able to give me some direction (thank you Alison), but ultimately, I found what I needed on my own thru alot of trial, error, and frustration. I wanted to share my experiences so that I can maybe help spare some of you the same.

There is ONE website (that I've found, anyway) that is not fancy, no frills, truly independent, is very honest, and has consumer information. I highly advise anyone interested in UCB banking to go to the site and read every last morsel --> http://www.parentsguidecordblood.com/. At the very bottom of the left-panel navigation is an area for Customer feedback on private banks. That is the most important part - consumer opinions. I posted mine last year and it's the very last one under the "Viacord" heading entitled "CBR versus Viacord, Aug 2004" by "Elizabeth in Chicago, Illinois." I am pasting it here below in its entirety, as well, which makes this a REALLY long post. I truly hope this is helpful for even just one person. And even after reading this, please be sure to look at other opinions, too, cuz I'm just one person. Also, it is unfortunate, but it looks like I'm the most recent opinion out there, so some are a little outdated, but many are still very worthwhile.

If anyone has any questions, I am happy to reply with any follow-up I can help with. I am a very big supporter of cord blood banking and feel that it's very important. However, it may not be right for everyone, and certainly not all banks or types (private vs. public) are right for everyone. I'm just one opinion, and I just hope it's helpful. I'll check this thread often for replies if there are questions. Good Luck to you!
============

CBR versus Viacord, Aug 2004:
(Please note the "editorial comments" are from the website editor)

I would like to share my experiences in researching cord blood banking options. I began this process completely aware of UCB and the benefits of storing its stem cells for later use. However, I was completely unprepared for the total and utter lack of consumer information out there. I feel there are two areas of cord blood banking on which to educate yourself before you choose:

1. What is it, what are the benefits/drawbacks of private/public, and is it right for me?
2. If I choose private, what are the companies out there, what are the best criteria for choosing one, and where can I go for third-party consumer information about these companies?

Question 1. I had down; however, I was shocked at the uphill climb I had ahead of me for question 2. I logically began my search wtih my doctor!

Nothin'.

I am a high-risk pregnancy and am at one of the finest hospitals for perinatal and neonatal care in the Midwest. You'd think they could tell me what to look for. Not so much. They said, whomever you choose, they send you a kit, we'll collect it, here is a brochure. I lost the brochure, asked for another one, but they had none and couldn't recommend anyone, suggesting an Internet search. Any idiot can do an Internet search, I was looking for an opinion from my medical professionals. But I was stuck so off to the Internet I went where I learned that Viacord and Cord Blood Registry were the leaders in the industry (according to stored numbers) and are all over every pregnancy magazine. One pregnancy message board member also suggested Viacord to me and said CBR was just as good. So, I called Viacord first, then CBR and ultimately went with Viacord after ALOT of comparing and mulling and being unsure. We didn't want to compare 20 companies so settled on comparing jsut these two. Bottom line is that the companies are NOT apples to apples. They're not apples to oranges, either, but they're not a complete one:one. It's more Granny Smiths to Crab Apples. Here are my thoughts on each company pruely from my own perspective:

MAJOR DIFFERENCES BETWEEN VIACORD AND CBR

FACT --> Viacord offers only gravity bag collection, CBR offers that or syringe.
SPIN --> CBR says you get more blood collected into the syringe than the bag, Viacord says the opposite. CBR talks in cc's, Viacord talks in ml's. (Editorial comment: cc and ml are equivalent)
MY OPINION --> After doing the math, one bag (same for each) holds more than the 3 syringes that are sent in the CBR kit. I'll go with the bag

FACT --> Viacord separates out the blood parts using the "Hespan" method, CBR uses the "Ficoll Hypaque" method
SPIN --> Viacord says both are very good methods, but only theirs is FDA-approved; CBR says Hespan is inferior and there's no such thing as being FDA-approved and that what Viacord says is misleading.
MY OPINION --> The FDA approval is directly correlated to a Viacord patent on how to increase the number of stem cells thru a duplication method (called Amplification), which is only in human clinical trials right now. I think the FDA stuff is a big who cares, as they're both accreddited with the AABB. However, I liked Viacord's civility toward their competition and didn't like the way CBR bashed them in return.

FACT --> Until two years ago, Viacord didn't separate the blood prior to storage. Now they do, but all transplants on record are from their previous non-separated storage method, not the current separated one.
SPIN --> CBR says there's no guarantee that the transplants of cells from UCB beginning two years ago (separated) will work as well or at all, as their previous method did. Viacord was evasive here and suddenly decided they didn't have enough information on this to comment. That was annoying. Upon a third call to Viacord, they admitted that no transplants were done on blood that had been separated before stored.
MY OPINION --> CBR is only shooting itself in the foot by saying that separated blood is no guarantee cuz that's what they've only ever done. I found this to be nothing more than a tactic. While I didn't like Viacord's evasiveness, I think CBR had no basis for planting the concern.

FACT --> Viacord has had only a third of the transplants that CBR has had; neither has said that they've had any failures
SPIN --> Viacord says CBR's numbers are inflated because (they say)CBR used to be a public bank, as well as private and that some of the transplants are from their public numbers, while Viacord has only ever been a private bank. CBR didn't say anything about that at all. (Editorial comment: Both of these companies have always been private banks)
MY OPINION --> Viacord's statements make sense, but ultimately we're talking 13 transplants vs. 30 or so; not a huge difference when you consider a total population of 60,000 in storage. Not concerned.

FACT --> Viacord's contract is 25 years, CBR's is 18 years
SPIN --> CBR says when the child turns 18, the account should be theirs and, therefore, contract ends for re-upping by the child upon majority
MY OPINION --> I like the longer contract, which Viacord insists you're locked into at the yearly rate without increase. Won't know for sure if this is true unless they suddenly stick me with an increase, but I believe them. If I'm wrong, I'm wrong. CBR said, and I quote "You're locked into the yearly rate for the full length of the contract, unless we have to raise our yearly fees." Ok, I might not like an answer that includes reasons rates could go up, but don't couch the bad news in a ridiculous statement. Also, I like the longer contract because 18 years is still a baby, and honestly, so is 22. I remember being both of those ages, and while I did pretty good, I fully believe that being in your mid to late 20's is a significantly different maturity level than being in your early 20's. I'll keep control a bit longer, thank you very much. ( Editorial comment: Don't trust a sales person's say-so on whether rates can increase. READ the contract. Either the rate is fixed or its not.)
UPDATE --> July 13, 2005: I learned after posting this that all of the statements made by the companies were misleading. Both contracts are only 18 years. You may be locked into a certain yearly fee for longer than that, but that means going "month to month" so to speak once the contract is over for the duration of your cost lock. I didn't do a good enough job on understanding this one before I signed.

FACT --> Viacord and CBR do massive amounts of marketing
SPIN --> Viacord says they pour alot of effort into educating the public and doing significant research. CBR doesn't do research but feels it's imperative to educate the public
MY OPINION --> Please, people. Of course, they do alot of marketing. It's a niche industry with nothing out there but their own spin doctors to sell their stuff. OF COURSE, they're gonna spend money on marketing. I would, too. Until there's a Consumer Reports for cord banking, this website's all we've got. Until then, you have to be as saavy a consumer as you can be and learn to parse the crap from the content. This is America, and therefore, no one -- and I mean NO ONE -- unless you're a non-profit org, which they're not, are gonna do something for nothing. Bottom line, they do marketing. Who cares.

FACT --> Viacord and CBR are vying for the same customers as everyone else, but they're the industry leaders at this time and, therefore, want you to come to them, not the other guy.
SPIN --> "Let me tell you why we're better than CBR." "Let me tell you why we're better than Viacord."
MY OPINION --> I don't like it when a company is not civil to its competition. It's bad form. Lawyers shouldn't bash each other and the good ones do not. Doctors tend not to criticize other doctors' work that they then see later. They may fix it and tell you what to do to fix it, but they won't say, "that guy is a quack." These aren't Republicans and Democrats. There's no reason to bash each other. I found them both to be somewhat unsupportive of the other, but CBR demonstrated more incivility than Viacord.

FACT --> CBR's kits are all sterile for both vaginal delivery or the OR field if you have a caesarean. Viacord's are not sterile for the OR; you need to attach a separate catheter that runs from the cord to the bag sitting a few feet away outside the sterile field.
SPIN --> CBR says this is bad! Viacord says if they didn't account for OR field sterility, they'd turn everyone away in case they had a caesarean, so of course they're sterile for the OR field.
MY OPINION --> CBR tactic. However, not completely without merit. Viacord was extremely evasive on whether or not their kits are sterile for the OR as is or if you need an attachment. That bugged the hell out of me. I want the truth! I'm not asking if using an attachment means it doesn't work. I'm asking for whether or not this is true, and educator #1 didn't bring this up at all; educator #2 said that in the past, you did need an attachment, but he *thinks* that's no longer the case and that they're now fine as is. Just tell me the freakin' truth cuz I don't believe that you don't know. Which made me quite sure that CBR was right about it not being sterile for the OR. I am fine with an attachment; I am not fine with being lied to. That was when I called back Viacord and got educator #1 back who told me the truth --> You need a catheter attachment.

FACT --> If you go into labor and your kit has not yet arrived or you haven't signed up yet, you may or may not be out of luck
SPIN --> Both companies have kits at the homes of company representatives thruout the US. CBR says that if a kit can't be brought to you in time, then the hospital can do a make-shift collection into a standard bag with a heparin component added to it. They say this is less than ideal but can foster a successful collection and viable stem cells. Viacord said nothing of the sort and said you're definitely SOL. Then I told them what CBR said, and they said, oh yes, you can do that, but it's not ideal. Hmm.
MY OPINION --> Having kits a reps' homes thruout the US doesn't mean they're in YOUR state, and it doesn't mean that even if they are that they live close enough to the hospital to get it to you before the baby comes. CBR looked up Illinois and said there are no kits in the state at this time; Viacord did the same and said there were several in the vicinity of my hospital. Is it true? I dunno. I was put off by Viacord educator #2's 180 on the make-shift collection method once prompted with CBR's statements. When I called a third time and put forth this question again to educator #1, he said, we don't do the same thing as CBR, but what we do is have a medical professional who is on call 24/7 on premesis talk with your doctor and walk them thru the recipe for what needs to go into a bag for us, and we've done this on several occasions. He also offered for me to speak to that person myself. Ok, good enough for me, no need to talk to them, I believed him. However, again, stop with the evasiveness just to make a sale.

FACT --> Viacord "educators" have a quota of enrollments they're expected to reach each month that affects their salary
SPIN --> Viacord says all the larger companies work on this model, not just theirs. Never did check with CBR on this question.
MY OPINION --> Make no mistake, these companies may be doing wonderful things, but there is a sales element that is necessary. Every company has a model of operation, and this one uses a form of commission. It is important to remember that when you wonder why they're so competitive between each other, but ultimately, I felt that the educators I spoke with at Viacord and CBR were fully knowledgeable about what was important. When they were not (i.e., Viacord educator #2), they usually admitted that they didn't know when prompted, and when I asked for documentation to back things up, it was faxed to me from both companies every time immediately. I want to add that CBR's educator #1 and #2 were both really good.

THE MOST IMPORTANT FACTORS IN CHOOSING A BLOOD BANK
This is all in my opinion.

1. MUST MUST MUST BE AABB-ACCREDITED

2. They should own their own lab/storage facility. If they rent space or are brokers, there's no accountability and alot of cooks in the kitchen.
(Editorial comment: I disagree with this opinion, but this is the feedback section and I just publish parent opinions)

3. They should be financially stable. READ the financial reports that are available about the company. Hard to find, but do your homework
(Editorial comment: There is a lot of inside financial info available on Viacord because they have filings with the SEC to go public. CBR is privately held, so you can't find out inside stuff like salaries for top employees.)

4. They should have a successful track record. If they have no successful transplants to show for their work, why are you trusting them? This is not the time to trust a start-up. It's the potential to save the lives of those you love.

5. They MUST have a disaster recovery plan (DRP) in place for fire, natural disaster, and other disasters.

6. They MUST have backup generators ON SITE, not wheeled in if a freezer goes down

7. California is not a good place to have the storage facility. Read: Earthquakes. I'd nix any coast, period. The farther inland, the better. UPDATE --> July 13, 2005: Truth is a disaster can happen anywhere; but the coasts are higher risk.

8. They MUST demonstrate that only authorized personnel are allowed at the storage tanks via separate authorization and authentication. In other words, just cuz you work at the building doesn't mean you should have access to the tanks. Like receptionists and cleaning people. And for god's sake, NO TOURS!

9. They should have 24/7/365 Customer Service. No exceptions. People have babies on Christmas and at 2am.

THINGS NOT TO GET CAUGHT UP IN AND MAKE YOURSELF CRAZY OVER

1. Hespan vs. Ficoll Hypaque. Until research proves one to be inferior

2. FDA-approval

3. Bag vs. Syringe. If they didn't both work, there would have been failures by now

4. Is the kit sterile for the OR field without the attachment? Not important unless it's not sterile at all and cannot be made to be. UPDATE --> July 13, 2005: Now that I've had my baby via c-section, I can confirm for you that this is no big deal. It was a catheter attachment, and the OB nurses had done this a zillion times. This is a complete non-issue.

5. Where is the headquarters located? Who cares, it's the lab/storage facility that matters

6. Cost. You get what you pay for. Cheaper is NOT better. There are no bargains here, folks. If you can't afford it, then you can't afford it; move on. Spending less is almost certainly spending money on inferiority in some aspect of this process. Again, I cannot stress enough, there are no bargains to be had, here. If you can't afford $1,600 - $2,000 up front and $95 - $125 per year, then you can't afford this.


SPECIFIC RECOMMENDATIONS

1. Do not give them your phone number. NOT. Do not. They're gonna ask. Every time you call. At least 3 times. But don't do it. You know where to find them, they're 800 numbers, all they're gonna do is bug you. I can't stress this enough. When you enroll, THAT is the time to give your phone number. Not before.

2. Call the company with every question, and call them as many times as you need. Leave no stone unturned. Write down the answers to everything or you WILL forget.

3. Read the company's financial statements. They are hard to find, but that is the best indicator of the stability of the company.

4. If you find them being evasive, call them on it and make them give you a straight answer. Do not be intimidated.

WHY I CHOSE VIACORD OVER CBR
I wish I could tell you something really profound or concrete. Ultimately, I just kind of got a better vibe with Viacord. Like an infanitescimal 2% greater vibe. I would have been happy at CBR, but I guess I felt that they weren't as kind to Viacord as Viacord was to them; I felt that the cryobags might possibly be better than the cryovials; I liked that Viacord does research; I was told that CBR's backup generators are not on site of the freezers (I was not able to confirm this); Viacord's Kentucky storage is closer to my home than CBR's Arizona storage (and irrationally felt that Arizona is hot, cryofreezing has to be cold, if the freezers go down it's hotter in Arizona -- not rational, but I'm honest about it). The biggie is that CBR admitted that there were no kits at any representative's home in Illinois in case I went into labor before my kit arrived; Viacord confirmed that they did have several kits in representative homes close to my hospital.

CONCLUSION
This was very long, and it's all my opinion only. However, I wanted to reach out to those of you who are in my position of being lost, not knowing where to turn, going crazy trying to find third-party information. This is a good website, and I appreicate the opportunity to share my experience. Good luck to you all.

-- Elizabeth in Chicago, Illinois

kensjen
07-13-2005, 11:11 AM
Thanks for posting this. I am sure it will be helpful to many of us. I haven't decided if I am going to do this, but your research will definitely be helpful to me. Thanks so much for taking the time to post this!

jd11365
07-13-2005, 01:32 PM
Wow! I wish I had this information when I was deciding. I went with New England Cord Blood Registry, basically blind. I had no idea what questions I should ask. This is going to be wonderful information for people searching for a cord blood bank!

Fairy
07-13-2005, 04:35 PM
Hi Jamie. Ya know what, the important thing is that since you chose to bank, you found a place, and you did it. There is risk to everything, and to be honest, one of the things that had me near tears was the sheer number of banks to choose from. How the heck do you choose?! From a zillion?! The biggest risk I took in this is that I purposely chose not to look into more than 4. I looked at the Baby 411 book, I did some searchng, and ultimately narrowed that down to Via and CBR knowing full well that it was a risk not to fully look into more. But it was that or give up. One day there's gonna be a big resource for all this stuff. Unfortunately, it's not here yet. Take care!

nov04
07-13-2005, 07:27 PM
Excellent post, thank you for sharing that.

Just to share our experience too:

One factor that affected our choice (or lack thereof because there are few choices here)

If you want to delay cord cutting, choose a company that uses the syringe method (it sounds like CBR from the post). If you use the bag method, less blood is collected and if you've delayed cord cutting, there may not be enough available for a deposit.

eta: it didn't matter anyway, dd had to be examined by nicu ppl immediately after birth so we did the collection.

jgriffin
07-14-2005, 09:25 AM
A couple in my birthing class looked into public cord blood donations and found Cryobanks International:

http://www.cryo-intl.com/

They have a public donation program that seems to be pretty similar to private banks, except there's no charge (they send you a kit, you have the blood collected, call them, and they send a courier to pick it up).

This is a minor point, but do remember to ask your doctor what his or her fee is for collecting the cord blood for you. It's probably something, and it may not be covered by insurance. And while it's probably not much compared to the overall cost of banking cord blood, it's something that should be considered.

Fairy
07-14-2005, 10:06 PM
Good point. My experience didn't include a fee from the doctor for that. I had a c-section, not that it really should matter. But another good question to stay complete.

omhopscotch
10-06-2005, 06:01 PM
Elizabeth,

Thanks for such a thorough examination of cord blood banking.......We have our first child's cord blood banked at CBR and did so WITHOUT all your reasearch (although I tend to be a similar type of researcher usually- my husband is an OB/GYN and has drawn for CBR and did the choosing on this one)..........

We are now due with our second and will bank her cord blood as well......I have always had a good experience/vibe with CBR but will certainly consider all your research and investigate Viacord.

Thanks for your efforts.

Jill

sobers3
10-06-2005, 06:11 PM
My question/concern is if the cord blood isn't needed in years ahead or you can't afford to pay the storage fee, how is it disposed of? Is there a way to retrive it yourself for disposal? Donation would not be an option for my family. Mary

brittone2
10-06-2005, 06:43 PM
Fabulous post. Thanks so much.

We opted to not bank DS's blood, and at this time I do not plan on banking any future children's blood. If I'm fortunate enough to become pregnant in the future, I'll probably re-research the topic though, and I'm so glad that you posted this information.

My parents mentioned there was something on a news show recently (Dateline or one of those?) discussing pros and cons of banking.

C99
10-06-2005, 11:20 PM
I also delivered at NMH and I agree: the information they give you is very confusing. I wanted to donate the cord blood. Initially I asked my OB and he said that he could collect it, but I needed to find the donor kit on my own. I did a bunch of Web searches and called around. I even called the maternity floor at Prentice trying to find out which company they preferred. They couldn't give me much information. I called a couple of different places and finally found that Lifesource could do it. They sent me a kit, which I got 2 days before I ended up delivering, and then my OB said that they had collection kits at their office. argh! And then at the hospital, there was great confusion about how to get it to the bank. The L&D nurses gave it to me even though the instructions said that it should go to the hospital's blood bank. I did get a receipt from Lifesource, so I think it eventually made it.

omhopscotch
10-07-2005, 11:54 AM
That would be a good question to ask the blood banking facilities before choosing one ..... But I imagine they would not let you retrieve it yourself for disposal....it probably would raise a lot of legal issues, the same way if you could not afford to pay for storage I doubt they could donate it for use by someone in need or for research unless you consent to it......they might let you decide how to dispose of it, if there's more than one way.

For us, it never crossed our mind on how to dispose of the cord blood if we didn't need it (probably the physician in him & the liberal in me brings us to the belief it is a valuable component in the fight against disease & we would donate it if we didn't need it) or that we wouldn't be able to afford the annual storage fee...... my guess about the fee is that as CB storage becomes more popular, the fee will first go up & then down, & level off to be competitive.

I don't know if my comments will be helpful, but I imagine donation & potential disposal issues will need to be addressed more thoroughly as cord blood banking becomes more widespread ..... perhaps we will know more about/have more public banking & the laws on who governs usage will be more defined so a greater number of individuals will find cord blood banking a real option.......

Jill