One of my most traumatic experiences as a customer was with a leading cord blood bank. Cord blood banks store umbilical cord blood extracted as soon as a baby is born. This blood is rich in stem cells which can be harvested for regeneration of organs and treatment of certain diseases, should the need arise. The morning my baby was born, someone who could be mistaken for a courier boy arrived, bleary eyed and grumbling to take the blood sample.
Almost three months after the baby’s birth, as I was stepping out for some grocery shopping, my cellphone rang. The caller was the medical officer-in-charge from the company’s laboratory in Chennai. The young lady proceeded to tell me why they had delayed sending me a formal report.
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A deadly phone call
The maternal blood sample, she said, had tested positive for a virus called HTLV-human T lymphotropic virus. It sounded ominous. I asked what the virus caused, because I did not feel ill at all. The caller stuttered and nervously said that it would do nothing now, but later in life, if my immunity came down, it could cause cold, flu and, “I don’t want to scare you…but there is a chance of getting…leukaemia later.”
I suddenly felt cold in the pit of my stomach, but recovered enough to ask a few more questions. I was informed that this virus was airborne and, perhaps, I got it by travelling abroad, which sounded absurd to me even in that dazed state as I had been abroad just once in the past two years.
Back home, my husband Googled HTLV and found that in a few cases HTLV caused a rare form of blood cancer called T-Cell leukaemia or a degenerative nervous disorder. What was most disturbing was that it could be passed on through breast feeding and “carriers” were advised against feeding their babies. I looked at my infant son gurgling and kicking his legs in the air and wondered if I had really transferred a deadly virus to him in the past three months. What was the right thing to do now: traumatize him by suddenly stopping breast milk or risk passing on the virus?
The puzzling part was that the Internet articles all said that the virus was in the same class as HIV—transferred through sexual intercourse, infected needles, blood transfusion or breast feeding. In our almost conservative lifestyles, it was impossible for me to encounter this virus unless someone used an infected needle on me while undergoing a blood test sometime in my life—a remote possibility. We also learnt that there were two tests for HTLV-Eliza test and Western Blot test. Only if both were positive, was the presence of the virus confirmed.
I called up the medical officer again with this information, who suddenly agreed that the virus was not airborne and this was indeed the method of transmission. Had they ever got samples where the mother tested positive for this virus? Yes. So had they not tried to do the confirmatory test—Western Blot Test—in foreign laboratories? They had tried, but could not find such a laboratory. No laboratory did it in India.
She suggested we give another sample and I wearily agreed. It was an exhausting evening, at the end of which we didn’t know what to think anymore.
A second chance
A retest was done. An agonizing week later, I called the officer in Chennai and heard the most relieving bit of news I had in a long time. I had tested negative in the second sample. The post-pregnancy antigens were mimicking the antigens that were released with HTLV.
Apart from the several instances of misinformation and incompetence that are evident in the above story, one vital question needs to be asked.
In the company’s American laboratory, they do two tests to detect the presence of HTLV—the Eliza and the Western Blot test. Only when both are positive, are they supposed to tell the client that she is infected with this virus.
In the Indian subsidiary, with no means to do the confirmatory test, it is unethical to write in the report that “the maternal blood tested positive for HTLV”. What is the person supposed to do except live with this crippling knowledge for the rest of her life? Considering there is no laboratory in India where they can double-check and given that HTLV cannot be treated, what does this inconclusive test do for them, other than shake up their entire family? A medical organization’s primary duty is to be certain of what you are saying to a patient, else not say it at all or at least direct them some place where they can cross-check.
In a case of sheer corporate indifference, the cord blood bank company decided to blindly copy the battery of tests that are listed by the foreign counterpart without modifying it to suit the local country. At a steep cost of Rs75,000 for the service, the Indian customer deserves better. If I had the time, I would have sued for “causing anguish, misinformation and unethical medical practices” and been richer by a few million.
Vandana Vasudevan writes stories of mass urban consumer experiences. She is a graduate from the Indian Institute of Management, Ahmedabad, and currently works with HT Media Ltd.