Tales of bad science, big money and emotional blackmail in the private umbilical cord blood banking scene in India
“The Mother is the panacea for all kinds of calamities. The existence of the Mother invests one with protection; the reverse deprives one of all protection… The man who, though divested of prosperity, enters his house, uttering the words, "O Mother!", does not have to indulge in grief. Nor does decrepitude ever assail him.”
Bhishma’s poignant words (from the Mahabharata) are thrust into your emotionally fragile pregnant mind as you open this pamphlet. At least, I imagine that is the idea.
Thankfully, my pregnant colleague who was handed a slew of such pamphlets while at a clinic for a routine check-up did not fall for it so easily.
So begins the gross trivialization of medical services in our country. For that is what this pamphlet was selling – cord blood banking services.
Umbilical cord blood is pretty established in the field of medicine as a useful resource for stem cells. Stem cells are specialised cells in our body which can develop into various cell types, unlike your average body cell which is designed to function as a particular type (for example, a heart cell or a liver cell). For this purpose, couples with a child suffering from diseases like thalassemia or some blood cancers, may be encouraged to have a second child and “privately” store cord blood during delivery. If the stem cells in the cord blood of the new born sibling are compatible with the sick child’s, a transfusion can be done, and the thalassemic child can possibly be cured.
The chance of siblings having compatible cord blood is pretty high, but in this scenario even a one-in-four chance is pretty slim considering there is a three-in-four chance that it is a mismatch. So very often, sick children have to resort to “public” stem cell banks, which store thousands of unrelated samples and function sort of like a blood bank. There is a reasonable chance of finding a match from an unrelated donor in a bank which has a huge collection.
But public banks are not where the money is. If you decide to donate cord blood to a public bank during delivery, you do this as a service like you donate blood. Whereas if you decide to store the cord blood for yourself, you need to pay the private bank an annual sum for the storage and maintenance.
Once the business potential of these private banks was realised, a dozen different private banks emerged, trying to lure in the burgeoning upper-middle class with promises of “biological insurance”, “miracle cells”, “gifts from heaven” and “disease-free futures.” So now every other couple expecting a child (at least in urban areas in private hospitals) is offered the “opportunity” of storing cord blood at time of birth irrespective of family history of disease.
Even if you are willing to ignore the patronising dumbing-down of scientific concepts in the pamphlets, and the unabashed misrepresentation of facts, there is still the absurdity of the implicit suggestion that unless you sign up you’re depriving your child of the chance to be cured of a potentially deadly disease it may be struck with.
I got interested in knowing what these parents are thinking when they sign up, and how well-informed they are. The responses were interesting. One of them offhandedly mentioned that her child now had protection from over 100 diseases (far from the truth). Another customer was a doctor himself and he got rather testy when I brought up the limitations of cord blood banking.
All three of the parents I talked to mostly relied on the argument that they did not want to miss any opportunity to help their child and it didn’t really matter to them that the number of actual success stories (of healthy-born children ever having to use their own cord blood which was banked when they were born) is practically nil.
In India, the private stem cell banking industry stands at Rs.100 crore, and is estimated to touch Rs.2700 crores by 2020, accounting for 17 percent of the world’s market, according to a PTI report.
Clearly, exploiting emotional vulnerabilities is paying off for these private stem cell banks.
(Nandita Jayaraj writes about her encounters with the strange and interesting. You can send her feedback at firstname.lastname@example.org. You can also tweet her @nandita_j )