Stemcell : Just a gimmick or is the Future? Providers in India?

[mathrisk]

While researching about Stemcell banking, I got really confused.
Among our known circle, just one person has opted for it - even though almost all others were aware of it and financially capable too. Even different doctors speak for both sides - some are saying positively (like it's nice to have an insurance like this) while some are saying it just business, nothing being proved yet.

To do or not to do !!!??

Have talked with 3 companies and they charge almost the same - around 60K. - Babycell, CordLife and Lifecell.
Anybody have any experience with any of these or somebody else ?
Need some advice on to how to choose the provider.

We have attended presentations from all the companies, bombarding us with medical jargons - DSS vs Sepax 2, CFU test, HLA cross Matching etc etc. Best part of the presentation was bad mouthing the rivals from where we came to know their low points.
But still couldn't make up our mind.

 

[vivek.krishnan]

From what little I know of this, it is highly recommended - I believe my relative had this done for her kid. But I know nothing of the providers in India. Think of it like an insurance - with some more catches?

 

[abhi1984]

Don't mind me saying but if you are unconvinced even after talking to doctors what can couple of internet strangers can tell you something to change your mind?

Still here's my take on it:
Stem cell can be considered cutting edge in today's medical tech. Lot of work is still ongoing. If you look up the page on stem-cell therapy on wiki:
https://en.wikipedia.org/wiki/Stem-cell_therapy

If you look at the line says - "bone marrow has been used to treat cancer patients with conditions such as leukaemia and lymphoma; this is the only form of stem-cell therapy that is widely practiced." Most of other therapies are still under research.

So the first question you are facing is - What can this used for? Most medical breakthrough requires years of research, followed by trials etc. This paying off the near future is not happening.

Second - What does the term life long storage mean? Most of the lifetime that has a time limit - say 20-25 years.

Third - What protection do you have against price increase later? Currently stem cell is at the fringes of society. Say tomorrow it does pay off and there is some big treatment which goes mainsteam. What protection do you have against these people extorting? Today, I hear a lot of stories of private hospitals extorting people even though they have a higher standard to meet. And these guys are just private companies without really having an Indian authority to answer to.

So, I would say this - like most investments, spend the money you can afford to lose.

 

[mathrisk]

Don't mind me saying but if you are unconvinced even after talking to doctors what can couple of internet strangers can tell you something to change your mind?

Oh seems you got me wrong. My bad, the thread title conveys so.
I will go for it, thats a definite.
But wanted to know some experience from anyone having dealt with the companies providing such services in India.

 

[Parix]

We got it done through lifecell when our son was born, the thought process was that
1. This is like a term insurance , you don't want to use it, but its there .. just in case..
2. Even though it was somewhat expensive, they had a decent enough finance scheme, to pay in 2 /4 installments.

From whatever I understood, the terms, conditions or features were similar across the providers, we chose lifecell based on some general reviews and payment terms. we chose the 75 year plan.
As the doctor was already familiar with the process, the collection storage and pickup was very smooth.. and there was SMS \ email status updates once the kit was taken from the hospital.

 

[vivek.krishnan]

My point was exactly what @Parix made - if you need it, its there. I don't think anyone would want to use it to make it paisa vasool, but in that rare case something happens.... Plus, hopefully, in a few years, this will be useful for treating incurable diseases. I don't think this is like some quack thing, but it's not yet proven.

After reading this, I googled for stem cell in India treatments, and autocomplete gave me cerebral palsy, spinal cord injury, diabetes, autism and weirdly, last of all, hair?

 

[Vasishta.Sushant]

I was approached by an agent from some organization (don't recall the name. Protea I guess). They quoted 55K for this. A little too much for something about which I don't know how it shall be utilized.

 

[abhi1984]

@mathrisk If you have already decided I am not sure the need of the thread really. Is it that whose marketing is best was your question?

Still let me touch upon the misguided opinion of insurance vs this which might piss some people so apologies in advance.

For one, I wonder sometimes if people understand the difference between taking risk and insurance. In one you artificially create a risk where none existed while insurance is about transfer of risk from one party to other, maybe multiples. An example is there exists a risk of bike getting damaged, by paying a small amount to the insurance company you transfer the risk ownership. The insurance company in turn using actuary tables transfers this risk to multiple parties - some who actually get their bikes damaged vs who don't. Is something similar happening here? No. Who is the risk taker here?

Second, as it happens with every business some has good experience while others face terrible experiences. In insurance you can look up the claim settlement ratio and find out what are the chances of things going wrong still (https://www.policybazaar.com/life-i.../articles/best-term-insurance-plans-in-india/). What kind of data are we talking about with these guys?
Also, I constantly see Bharti Axa ads during Ind-Aus test matches. They push insurance agents as friends and grievance counseling as added services to their insurance products. They even do a home pickup etc too. Looking at the settlement claims I would rather opt for something better. So good experiences should not be the hallmark of something being good. Lot of businesses are very helpful until push comes to shove.

Third, insurance has IRDA monitoring it. So if things were to go wrong, one can still approach them for payouts. What authority do these companies work under?

When one of these guys were doing a presentation in my company, they talked about multiple accreditation but no regulatory authority. Most of the accreditation was about pharma formulations. The only one which directly related to stem cell was - AABB. And they don't have the authority to make these companies cough up the money in case something happens. Heck, because they are privately held they don't even have guidelines to publicly announce if a snafu happens. They can still claim business as usual and collect money.

I did ask them how did they arrive at the upfront payment figure? Because with time everything becomes costly and wouldn't it be better to have say a one time setup followed by monthly subscription cost which could be adjusted later ala insurance? They gave some vague answer to it. They might have a better answer now.

That all said, I will repeat what I said in the previous post. Take this as a penny stock investment. So spend the money you can afford to lose. If it pays off you hit a sixer but if not its life as usual.

 

[logistopath]

Right now, stem cell banking in India relies on emotional blackmail rather than hard scientific proof. As of today, there are very few diseases that can be cured by stem cells. Research in the right direction is going on; that is for sure. Still, whether it is worth investing in stem cell banking, is a matter of controversy. Leaving aside emotions, storing stem cells for future personal use does not carry much benefits.

• It is not like stem cells can replace your entire missing arm or leg, if you end up losing one in an accident.
• They might help in treating certain conditions, but usually such conditions are rare.
• As an adult, the amount of stem cells needed will be much higher, and the 40 or 50ml of stored cord blood might not be sufficient in many cases.
• It might be useful for siblings of the donor, but again, the chances of it being a match is just 1 in 4. 75% of the time, the affected sibling might need to look for donors elsewhere.
• Cord blood isn't the only source of stem cells.
• Pre-existing genetic conditions cannot be treated because the stem cells themselves will have the same genetic defect.

From the industry point of view, I have my own doubts.

1. What happens when the cord blood needs to be retrieved? Do they charge anything then?
2. What is the guarantee that the cord blood has been stored under proper conditions? If at all the viability of the stem cells seems to be questionable at the time of retrieval, do they refund you back?
3. There seems to be no regulations in place right now in India. Also, how well these private agencies stick to ethics is a question.

The amount of investment that these preservation banks blackmail out of families is substantial. It's more than a month's salary for most middle class people. When they take that much of money, they have to substantiate their claims with valid reasons and scientific proof. Merely saying that you will be a good parent only if you store the cord blood, is just blackmail. Like I read somewhere, the parents should make an informed decision to do this. They should not go for stem cell banking out of guilt.

 

[logistopath]

TLDR version: The cost to benefit ratio is too high right now. Make an informed decision to go for stem cell banking. Do not be pushed into it through ads and emotions.

 

[mathrisk]

From the industry point of view, I have my own doubts.

1. What happens when the cord blood needs to be retrieved? Do they charge anything then?
2. What is the guarantee that the cord blood has been stored under proper conditions? If at all the viability of the stem cells seems to be questionable at the time of retrieval, do they refund you back?
3. There seems to be no regulations in place right now in India. Also, how well these private agencies stick to ethics is a question.

Replying from what i learned from the sales presentations of those companies
1. They don't charge anything at that time. They also offer free transportation to the requested location.
2. If the company cannot give back viable cell when required, they will look for same in some 'community banks' worldwide for matching cells. (Some HLA protein matching is the buzz word here). If not found, they would refund some 20 Lakh or so (at least thats what is being written in their agreements).
3. Yeah, no idea about this though.