Friday, April 12, 2013
Share & Care- Social Media Donor Scams
Share & Care- Social Media Donor Scams
Recently one of my facebook friends shared an interesting post on his facebook wall...a public service message asking for donation of stem cells for a patient with chronic myeloid leukemia (blood cancer) and more importantly a just diagnosed patient who was about to undergo treatment in the future (mentioned in fine print). Now this was a new one for me. I mean I know about CML...In blood cancer there is an excess of one type of white blood cells produced by the body and hence the treatment involves extensive chemotherapy or radiation therapy to destroy those abnormal blood cells. But when we set about doing total destruction of those blood cells we might also inadvertently injure the bone marrow- which forms these blood cells. When all the cancer blood cells are dead we need the bone marrow to start producing normal blood cells for us. If it fails to do so we need to kick start it by getting new bone marrow cells from a donor who is closely related in blood type and injecting them into the now inactive bone marrow and wait for it all to start working again.
The usual practice is to look for donors among close relatives, people who share the same blood-type after matching (HLAntigen matching) and harvest bone marrow cells from them to inject inside the patient. The closer the relationship the better, because the matching would be better and risk of rejection by the patient’s body will be reduced. Recently there have been research papers published about using stem cells (which are undifferentiated cells and so capable of turning into any kind of cell you want) to inject into the bone marrow, wait for those stem cells to turn into bone marrow cells and then start producing the new blood cells. But this is not a widely accepted treatment option yet and still experimental. And it is certainly not accepted practice to ask people- as many as they can reach, to come and swab- or donate their cells to be tested for genetic match. No one would willingly donate their genetic information to an unknown company if they knew the risks involved and the possibilities of their genetic information being misused, but more on that later. Let’s just talk about this ad now - the ad couched as an appeal to good hearts to donate stem cells posted on social media networks where with a click of a share button you can reach a million people online - the perfect place to pitch a scam if ever there was one.
So the next day when I went to work I casually brought this up in conversation with a few friends and colleagues and then a few friends of friends and others who are more knowledgeable than me in stem cell research and the consensus was this was one more stem cell scam. The word stem cell treatment has become such a magical word in the public mind that more and more unscrupulous elements are using it to cheat gullible patients with experimental treatments which are not yet accepted by the wider scientific community as standard. That’s the consensus of the experts in the know.
So before you donate your body parts or even a few cells from your body (and i am including your sperm cells here too) please take a minute to think about all the ramifications of what you are doing and whether you are actually benefiting anyone or just falling prey to very intelligent scamsters, who, god only know what they will do with the stuff they steal from you. The international trade in genetic information is banned in most western countries, so the scamsters seem to have switched over to the gullible countries like us. India is filled with educated but naive people. A lot of the people who hang out on social media networks might have fancy degrees, but they lack street smarts and believe everything they read online as gospel truth. A small example of this naivety is the chain mails we get, threatening us to share it online or face god’s wrath and bad luck. Don’t we commonly see even highly educated people following the instructions and spamming everyone else? And that’s how these stem cell banks work. They play on your goodness, appeal for help to some poor unfortunate with whom they have no direct connection at all and once you respond to their appeal and go and donate whatever cells they want from you, they collect and bank your stem cells for future use. If they collect a lot of such stem cells, they are bound to strike lucky with a treasure trove like Aladdin’s caves filled with genetic goodies. And once they patent those genes, they are set for life - our life and all your off-springs lives.
OK. If you feel that I am only talking about extreme scenarios and none of this is relevant to you, the aam admi, let me talk about something we all (including yours truly) do so casually. Let’s talk about blood donation. Blood is a rare commodity. We cannot manufacture it commercially. We have to depend on kind hearted donors for voluntary donations. A lot of us are voluntary and proud blood donors, but do we know what happens to the blood we gave after we leave? Please ask for an itemized bill next time you get a blood transplant at any hospital and check the rates they charge for administrative and processing fees – you will be surprised. When a patient requires blood for a surgery, the licensed government blood banks sell a unit of blood for an average rate of rs.300-350/ a unit. The same single unit of blood is sold by private blood banks at average rate of rs.3500-3800 a unit. And if it’s a rare blood group not easily available at other blood banks or if it’s in the middle of the night when other blood banks are closed and a dire emergency, in such cases the blood banks have been known to up their price to even rs5000-5500 for a single unit of blood.
If you are like me and ask why such a big difference in prices? Then the answer is greed, plain and simple. I agree that it cost some money to store the blood in refrigeration units, test it for diseases, cross match it for blood groups etc, but it cannot be that costly or overpriced enough to cost 20 times what a not-for-profit organization charges. Plus the blood you donate is also divided or fractionated into plasma, cells and clotting factors etc and each one is sold separately (to different patients) at a tidy profit. The blood bank of a corporate hospital is also run as a profit making unit- the more profits the better, so they should save the platitudes about saving lives. Remember that this was the same blood you gave for free; wishing it to benefit someone in actual need. But in the end all you did was make someone else looking over his annual balance sheet, a very happy and very rich man.
Not that I am downplaying the value of the blood you donated. Ultimately it’s going to end up in the veins of someone who needs it, so you will get all the good karma you have earned by donating, but some middleman will also make a neat profit in between you two- the donor and the recipient. There is also the widespread practice in most corporate hospitals (go check for yourself if you dont believe me) of not only selling blood to their patients at exorbitant rates but also in demanding replacement donors from the patients relatives and friends for the blood they sell. So every time you share a post online in social media- an appeal for friends and large hearted people to turn up and donate blood- like you see every day on your facebook wall and a dozen people rush up to voluntarily donate in your name, do you think they turn away the other eleven donors saying we supplied only one unit of blood so we will take only one unit of blood as replacement? So in the end not only the patients relatives have paid for the blood in cash they have also paid for it in kind multiple times. This is the reality. In India we make money out of everything, because we are a nation of entrepreneurs and we cannot blame anyone else for taking advantage of our laziness (and ignorance). So its left unto each one of us to do things with diligence, to check whether what we are giving voluntarily does reach the ones we actually intend to benefit and no use in later on blaming others who make money out of our ignorance and misguided motives.
And now before you condemn me for being such a heartless arsehole who is against life giving donations, i would like to clarify that you have it wrong. I am merely warning you to read the fine print, understand the issues in its entirety before you do something you regret years later. Most scientific advances take turns and progress in ways which cannot be predicted. I am sure everyone has heard of the recent story in the American media of the man who had once donated sperm at sperm banks for 50dollars each time to help finance his studies and who is now being sued by more than a dozen of his unknown offspring (altogether) for a million dollars each in child welfare costs and for neglecting them as per parental duties. I know it’s an extreme example, but it illustrates my point. With time, laws change and what you now hold as a given may not always be so with the passage of time. Your anonymity may not stay guaranteed in the future and what you do today might have its consequences later on- even to your detriment. And as someone said every good deed has its cost and we must consider all aspects before plunging in.
I keep thinking about how the same people who are so worried about google reading a few mails of theirs or who worry about google remembering their search strings and then go on to label google as "the evil empire" are later so causal about donating their entire genetic information- essentially what makes them human- without thinking through all the possible ways that their genes could be misused. At last count over two hundred actual genes have been patented by bio-tech companies and these are actual genes present in you, me and everyone else. What it means is that if you have any disease which is affected by those genes, you cannot (or no other company too) find out any cure for that disease by yourself, for only that company holds the right to your gene- and whatever you discover about yourself has to be immediately handed over to that company. So any mutation you have in your gene or any special advantage your gene confers on you can be patented without your knowledge and billions made of that information- information you carry inside every cell of your body and which is rightfully passed onto your offspring.
If you worry about your intellectual property rights, your copyrights and your concerns about plagiarism and this is for my blogging friends, if you worry about safety issues of your blog contents on google hosted blogger and shift onto open source wordpress- think how safe is your genetic information which you are so casually handing over here, there and everywhere? how would you feel if twenty years later you were to meet your identical clone who is now an underwear model with his/yours body pasted over every billboard on mount road in your undies proclaiming the advantages of wearing sudarmani jattis instead of jockeys? This is an extreme example, but this is just one of the million ways your genes might be misused by your being careless today.
So to come back to the point of this post, every time you rush to donate one of your organs (kidney, liver, sperm or cell) think things through with all its implications before you do so. Don’t get taken in by Internet scams asking for voluntary donors unless you know that the actual beneficiary is genuine. Social media is full of fake bleeding hearts and there are several very brilliant people who make money by fooling you and me. So don’t be stupid and share chain mails or tear eyed appeals, unless you know the actual person yourself. In a nutshell- dont be a fool and don’t lead your friends into foolishness. And before i forget. Yeah go ahead and donate, but ask the right questions, show them you are aware and informed of the implications of what you are doing and make sure they don’t misuse your genuine kindness. Knowledge is power, but asking the right questions is the surest weapon. So ask, hear and then decide. Best of luck with earning your good karma
P.S. please read this write up on forbes about the Food And Drug Admin of USA (the federal regulators opinion on stem cell bone marrow transplant and also this advice to patients by the FDA. Another interesting perspective is from Science Omega here and an expose from Nature Magazine here.