Friday, August 06, 2010

Stem Cell

"We don't have a contingency plan, because it's not likely to happen". - Anonymous Korean Stem Cell Company Representative.

Before we went to the BEXCO Baby Fair, my wife broached the subject of umbilical cord stem cell harvesting with me. Apparently the idea was that if the cells were harvested from the cord blood and stored, our child would potentially have a better chance of recovery from future diseases such as diabetes and blindness, and eventually also problems that would benefit from a regenerative medical solution, once technology allows.

I'd heard about stem cell harvesting, but thought it was a niche activity much more in the realm of fringe science than common reality. As far as I'm aware, it's not a subject which tends to raise itself in my own country for expectant parents, but I should have guessed that in Korea - which has pioneered some stem cell research - the question is much more in the public domain. And the three Korean stem cell harvesting companies with stands at BEXCO only brought me more rapidly to that realisation. This is a big business here.

So during our trip to the Baby Fair we sat down to talk to each company, armed with questions. Apparently this was not the norm for the company representatives we met, who implied that most customers just listen to their extended one-to-one presentations and sign up, quite possibly with the perception that everyone else was doing it, so they should too. It doesn't help that the business is premised on the collective guilt-trip that is doing everything you can as a parent for your baby's future health (the American Academy of Pediatrics in their review of cord blood banking nicely summarised this as "families may be vulnerable to emotional marketing at the time of birth of a child"), and worse that there is more than a small element of naked self-interest, insofar as treatments derived from the stem cells can also be used by the parents for themselves should they need it - in which case the child's guaranteed allocation is supposedly filled from a general stem-cell bank.

To be fair, one of the issues we were concerned with was the financial stability of the companies concerned. There seemed little purpose of going to the expense of putting stem cells in a tissue bank if there was the real risk of the operating company going under and switching the machines off at some point in the future. Since retaining these stem cells is a one-time-only opportunity, the benefits of which may not be called upon for fifty years or more, it stands to be a very long term relationship. I was not encouraged to discover that some companies in the industry had upfront costs but no further maintenance charges, because while it sounds financially attractive, the business model runs the risk of being little more than a stem-cell pyramid scheme which is financially unsustainable in the long term. The companies concerned might argue that all future costs will be absorbed by the upfront charge, but since they can't know what the future cost of electricity, storage and wages will be, any company operating this model might start running a loss on progressively more of their inventory. Such developments have a habit of bringing down companies very quickly. We were also quite inquisitive on what contingency plans existed in the event of extended power outages at the tissue bank. This possibly transpired to be a prescient line of questioning since the particularly hot summer this year is pushing Korea's low electricity reserve margins to the limit and threatening extended blackouts.

To their credit, one of the company representatives we talked to was armed with financial statements allegedly showing their robust financial health, demonstrating that they knew that there was a concern over long-term security of the stem cells in their care. The problem was though that the balance sheet concerned - impressive though it was - belonged to their publicly-listed parent company. Indeed, none of the three companies we talked with were truly independent or integrated operations, but rather financially separated units of larger publicly-traded groups which made it entirely conceivable that they had to be independently viable and may not receive backing from the parent company should the business make losses and become insolvent.

We didn't really make a lot of progress conducting limited due diligence on the companies we were considering entrusting our stem cells to, nor in truth did we expect to, but it wasn't a wasted effort on our part; a couple of companies stated that in the event they could no longer store our cells they would allegedly inform us, but we didn't choose to do business with the company whose representative told us of financial failure "we don't have a contingency plan, because it's not likely to happen"...

In truth, the whole business of harvesting stem cells is little more than a contingency plan - a little insurance and peace of mind if you will. The evidence of the efficacy of treatments is mixed, scientific progress may render the availability of umbilical cord stem cells less relevant, there's currently little evidence that donations from unrelated donors in stem cell banks are any less effective (or ineffective), and the wild claims that are made regarding the treatment of hereditary or genetic conditions such as leukaemia may be wide of the mark - these are pre-existing conditions which may not benefit from the use of stem cells which may carry the same problems.

We signed up anyway, because even if one of the companies we talked to didn't have contingency plans, we wanted to have one for our baby. The cost was 1,300,000 won (£702/$1,115), and the company will liaise with the maternity hospital to take the cord blood and rush it off to the tissue bank as quickly as possible when my wife gives birth. The cost covers the first 20 years of storage rather than it being an open-ended lifetime commitment, after which the company we signed up with "doesn't have a charging policy yet" - this is still a relatively new industry. It may not be ideal, but we tried to chose the company most likely to be around in 20 years. Because the stem cells are not really geographically portable, it also means that should our child need any treatment in future, we will need to return to Korea for it if we aren't living here.

5 comments:

Jan said...

Interestingly, was just hearing about a five year old boy here who has had a new trachea grown inside him from his stem cells, so harvesting has obviously been quite the norm for some time. I was surprised because I didn't realise it had been so organised here and thought that is was still surrounded by controversy and legal wrangling - but then, I don't have kids so I guess it wouldn't necessarily flag up for me.

almostwitty.com said...

$1100 seems a bit steep to store something you may have no need for, ever (then again I am a miser!)

Are there any Korean children who have benefitted from having their stem cells harvested?

Mike said...

I believe the cost is generally even more expensive in the US. The problem is what if your child does need it, and for the sake of $1100 you haven't prepared? It probably doesn't mean that you won't have the treatment option, but the expense and inconvenience will likely be much greater. I also recently spent that amount buying a DSLR, so it seems wrong in that context to forego the stem cell blood banking. Where would my priorities be then? Spending money is basically an immoral act anyway - don't worry about being a miser.

I actually haven't read about Korean children who have benefited from treatment, but then I can't read Korean language newspapers so that's no surprise. I'm sure there must have been cases.

bill said...

From time to time I have read about stem cell development here in United States. And from time to time it has been has been a controversial subject. I suppose because my family was raised I have not paid much attention, more like reading about someone's distant war. I had no idea South Korea was so far advanced in this technology. Good, informative article.

nakemolerat said...

They started taking sample of cord blood at birth in the US, I don't know how long it's going on but from what I can recall didn't happen 5 years ago with my daughter but they did take a sample from my boy 2 years ago with my consent. Of course storing them for a fee was always available for option.
Benefiting from cord blood is long way from realization, I think and I hope no one has to go through that.
What's interesting is that in US they've started mass collection of cord blood sample. They said it was for research and for collecting data and sample won't be used in stem cell research or similar and it'll be stored in a freezer.

I am little uncomfortable with that but reassuring thing is that if or when that technology comes about and we can actually benefit from it we can get to that sample. I hope we don't have to.

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