Mathia Lee ~ Plans and Preoccupations

Cord blood banks: Scam, Science, or matter of faith?

Posted in Life and Death, Social Commentary by mathialee on February 22, 2010

Should I bank my baby’s cord blood or not?’ Because my Phd is a study into the way each and every different cell of an embryo develops from a single stem cell, the mother of my now-2month-old god-daughter sought my advice a few months back.

‘It’s a matter of faith’ I answered very carefully.

In light of today’s reports, where prominent & highly respected scientist Dr Irving Weissman cautions us against fraudulent stem cell therapy claims,

(http://www.todayonline.com/Print/World/EDC100222-0000066/US-scientists-warn-of-stem-cell-fraud )( http://www.todayonline.com/Print/Singapore/EDC100222-0000083/Warning-is-timely,-says-StemCord-director )

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I thought I’ll share the reasons I gave her :

- The way the whole cord blood idea works is this:

In the cord blood (found in the umbilical cord that attaches the placenta to the baby at its navel and is cut off at birth), there are lots of stem cells.

In some kind of diseases, the body’s natural stem cells or other types of cells are damaged.  Stem cells from cord blood (bone marrow can be used too) is meant to replace these damaged stem cells, or used to grow the types of cells that have been damaged for transplant.

Like organ transplants,  the cord blood or bone marrow stem cells need to match the patient. It can be very hard to find a bone marrow donor who matches the patient. This is why cord blood and bone marrow banks are so important : to increase the chance of finding a matching donor.

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This is also why parents choose to bank their child’s cord blood – because the child’s own cord blood will be his perfect match.

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-As of now, stems cells found in cord blood can save lives, and can treat various diseases.  

If your child unfortunately has some of these conditions treatable by stem cells, having the cord blood would be useful since they are a guaranteed perfect match
(Locally, here are some news features of the successes:  http://www.straitstimes.com/Breaking%2BNews/Singapore/Story/STIStory_407175.html

http://www.sgh.com.sg/about-us/newsroom/News-Articles-Reports/2007/Pages/The-miracle-of-cord-blood-TODAY–20070828.aspx

http://www.straitstimes.com/Breaking%2BNews/Singapore/Story/STIStory_339862.html

http://www.cordblood.com/cord_blood_news/stem_cell_news/article_patients_get_new_knees.asp?fbid=-rNm9uMUGoH

And MOH’s response to a question raised by an MP in 2007:

http://www.moh.gov.sg/mohcorp/parliamentaryqa.aspx?id=17888 )

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-Not every single disease can be treated using stem cells. Not every treatment is successful.

That’s just a limitation of medical science currently.  Currently very few illnesses can be cured using stem cells.  Amongst the illnesses that CAN be cured , the success rate isn’t 100% either. The success rate depends on many things — the patient’s condition, the doctor’s skills, the hospital facilities, the donor’s cells’ condition, and many more factors which are unknown or poorly understood as of now.  What is the success rate locally? I’ve no idea, have not got the chance to go find out. That will be an interesting question, if anyone knows, let me know?

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So when parents bank their child’s cord blood, it is not for a guaranteed cure, but for a possible cure. Just in case the child has an illness that can be treated by stem-cells. Just in case the child can’t find a donor. Just in case the treatment is going to be successful. Just in case = Faith.

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-However, medical science progresses so quickly, you never know what new cures can be found tomorrow using cord blood stem cells

This is where the biggest lead of faith lies.

This is where you need so much faith in science, it becomes religious

When I was doing my undergrad studies in the early part of this decade, only embryonic stem cells (cells derived from an embryo in the first few weeks of conception)  could make a whole new complete animal. Then Yamanaka http://en.wikipedia.org/wiki/Shinya_Yamanaka came along, and invented a method where you could convert skin cells into cells similar to the embryonic stem cells. These cells could form a complete whole new animal as well — meaning that today, your skin cell can be used to make a whole new you.  It’s not a perfected technology though; the success rate is low.

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When the Human Genome Project (where all the human genes were being sequenced and decoded) was started in 1990, it took so long no one thought in could be done in 10 years.

Then in 1998, Craig Venter of Celera came along with a new technology that revolutionised and sped up the whole project. In 2 years, a rough draft was completed.

In 2008, I was at a conference here in Singapore,  where this guy was presenting his new sequencing technology which just amazed us. I remember at the end of the presentation, the host of the session asked him incredulously “You’re saying that the Human Genome, which took us  10years to sequence, can now be done in an hour with your technology?!?” I will always remember the guy ‘s face (looking like a complete geek) when he answered. Without hubris, without arrogance or show off, almost embarrassed at making such a ground-breaking invention, he answered “Yes”

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What’s my point?

Scientific progress doesn’t always evolve slowly. A lot of times, it progresses in a quantum leap. In the second it takes for an apple to fall on Newton’s head, gravity gets discovered. In a few weeks that Flemming got his cultures accidentally contaminated, he discovered antibiotics.

Theoretically,  cord blood stem cells can be stored for decades. Today, Prof Wiessman might be right in saying that lots of diseases cannot be cured and are false claims. In ten years however, will that still be true? Who knows.

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It’s that leap of faith, in science.

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-The most important point tho’: Are they keeping your baby’s cord blood stem cells properly?

When your child grows up and unfortunately, falls ill and needs to use his bank, the cells must be in good condition. It would be great tragedy if the cells were not usable, because the cord blood bank did not store the cells well.

Cord blood stem cells need to be processed very carefully before they are stored, and when they are taken out for use.  During storage, the temperature should be always at -180 degrees Celcius, and should not fluctuate. For this purpose, cells are stored in vials in liquid nitrogen. This also means that for the decades the cells are being stored at, the tank must never ever run low on liquid nitrogen.

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These techniques are very well established; it’s one of the basic routine techniques every laboratory that works with any cells will have.  Yet it’s a technique that can go wrong, especially if there are insufficient quality control checks, insufficient training and supervision given to the cord blood bank’s staff, or insufficient resources spent on ensuring good reliable equipment.  Even when done properly, things can go wrong, but at a much lower rate. 100% is unreasonable.

Because current medical science cannot guarantee that stem cell therapy would always work, some unethical cord blood banks have exploited this uncertainty to cheat clients.

It’s very similar to those shady investment companies. We all know that investments, even when ethically done to the best of the investment banker/trader’s ability, may or may not profit. We all know that there are unethical bankers who exploit this uncertainty to earn huge brokerage commissions by running a scam.

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It’s exactly the same with cord blood banks. There are banks that will bank the cord blood stem cells well, and banks who are just a rip off, and when the time comes, will tell you “Ooops, you fall into the category where the stem cells didn’t work”

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-So are cord blood banks a scam?

The short answer is yes, some are, and no, not all are.

Companies which makes false claims to attract customers, are also companies I doubt will be ethical enough to keep the cord blood properly.

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-What can parents do? How will parent’s know?

Honestly, as laymen, parent’s wouldn’t know everything. It’s really like investment banking — there are things that consumers need to be aware of and investigate, and then there are things which regulatory bodies need to  be responsible for.

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In cord blood banking, regulatory bodies need to ensure 2 main things

  1. False claims are not being made. Companies should describe pros, cons, uncertainties etc.
  2. Regulatory bodies need to ensure (eg. Through audits) that processes and facilities are CONSTANTLY in place, over the LONG TERM, to ensure proper treatment and storage of these cord blood stem cells.

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As consumers, it is a huge leap of faith.

Things that one can do:

  1. Talk to your doctor, get his recommendation. A good doctor should know which are the more reliable cord blood banks
  2. If you are approached by banks, or scouting for banks on your own, the ones that make wonderful claims are likely not legitimate. But then again, it’s really hard to tell. If your country has a regulatory body, call them up and check with them. Look for more banks — rivals tend to rat on each other.
  3. Cord blood banks that regularly make it into the credible news papers for contributing to successful treatments, or who are endorsed by independent good doctors, would be a little bit more reliable as well.

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So to bank or not to bank? At the end of the day, it’s one’s choice to make that leap of faith.

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11 Responses

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  1. Debbie said, on February 22, 2010 at 10:32 am

    Hi Mathia,

    Some wild thoughts after reading your post.

    Wonder if the cord banks are insured, if yes, I wonder the extensiveness of its coverage.

    And if there would be insurers who would launch new insurance products to cover the account holder for possible loss (when their stem cells don’t work, damaged or lost).

    But then, human lives are priceless, human cells are priceless.

  2. [...] the rest here: Cord blood banks: Scam, Science, or matter of faith? « Mathia Lee … Share and [...]

  3. JoeLee said, on February 22, 2010 at 12:59 pm

    When I first saw the report on cord cell scams, the 1st thing that come to my mind was “perhaps Mathia Lee can shed light on this”. When I visited this blog, the answer was already here in this posting.

    My friend and his wife signed up for a package costing about $2K a year to have their baby’s cord blood stored. I really wonder whether it will be usefu.l But when I visited KK Hospital, I saw posters everywhere on cord blood storage so I assumed that that the science behind it was well established and sound. Apparently, the marketing hype and profit seeking investors might have resulted in parents being sold promises that cannot be fulfilled.

    I support your suggestion for some kind of regulation at least for the storage facilities. Otherwise, parents can be paying $2K per year long after the cells become damaged and useless.

  4. karenlgould said, on February 22, 2010 at 7:24 pm

    And if you’re really faithful in science, you may conclude that stem cells will not be necessary by the time cures using this kind of technology are available. Other cells, collected from the child at the time, may serve.

    I don’t know the answer to this one. We didn’t do it for either of our children, mostly because of my husband’s scepticism. I probably would have, as I see the only thing you have to lose is money, and am easily sucked in by the reasoning that any amount of money is worthwhile for the chance to save your child’s life. But it’s so speculative that I can’t feel strongly one way or another.

    I am a little disturbed by the way marketing encroaches on the maternity hospitals I have encountered (in Singapore and Hong Kong). My Singapore-born child was sent home wrapped not in swaddling clothes but in formula logos. People do infer legitimacy.

  5. M said, on February 23, 2010 at 10:17 am

    Does Pascal’s wager have any validity in this scenario?

  6. [...] An interesting read here. [...]

  7. mazemktg said, on February 26, 2010 at 4:19 am

    In the US, the cord blood banking processing and storage requirements are regulated, so any bank that’s AABB accredited and is processed in an FDA (Federal Drug Administration – a government oversight agency) follows the same protocol. So, in most cases, a parent-to-be can confirm if the bank under consideration has those accreditations. Then, it’s up to pricing. See http://www.parentsguidecordblood.org for information (including pricing) for cord blood banks globally. Though I work for MAZE Cord Blood Labs, that website is not ours; it belongs to a scientist who lost a child to a disease that cord blood transplant could not cure. Dr. Verter has synthesized the international cord blood scene with great care.

  8. mathialee said, on March 2, 2010 at 6:12 pm

    i was just wondering

    Perhaps the way to solve this with minimal manpower is to change the way payment is made. The public blood banks have quite a good payment system

    It is free to deposit and maintain your child’s cord blood stem cells. Only when you use it , do you pay. People who have chose to donate pay say ~ 30,000 to use. People who choose NOT to donate pay ~100,000. Thus users will cover the costs of donors who did not use the Stem Cells.

    Since the companies are paid only when cells are used, they have an incentive to ensure the cells are stored well.

    To cover this huge costs, insurance companies should bear the risks and costs, as with transplant surgeries. Non-donors who have to pay much more will of course pay a higher premium. People who are non-donors for unavoidable reasons other than choice, will be exempt.

    This ensures as many people as possible donate. One might argue that the poor will be disadvantaged since they will be more incentivised by the financial scheme.

    However, no harm is done to the donor, unlike with organ transplants, thus they cannot be considered to be exploited.

  9. Mark said, on July 8, 2010 at 4:19 am

    A good article expressing legitimate concerns about cord blood banking, although I’d disagree with the statement that a doctors recommendation is a best bet, assuming we’re talking about an obstetrician at least.

    That’s not to say they’re ignorant on the subject of course, but less likely to be involved in the retrieval and actual use of the corresponding stem cells than other specialists who would have experience on the receiving and treatment end of things, which is a much better indicator of whether there is appropriate care and storage at a particular blood bank.

  10. bank cord blood said, on January 2, 2011 at 11:45 am

    Your data about the activity of the cord blood banks are really very interesting, and I would say unique
    How did you got them ?


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