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Updated: April 4, 2012 10:07 IST

To save a life, no amount is too much

R. Sujatha
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Damayanthi with her child Sanjana Praveen Shivanka. Photo: S.R. Raghunathan
Damayanthi with her child Sanjana Praveen Shivanka. Photo: S.R. Raghunathan

Sanjana Praveen Shivanka is 20 months old and has severe combined immunodeficiency (SCID). The Sri Lankan ‘bubble baby', suffered from a condition which forced him to live in a sterile environment as his immune system was seriously compromised. Like 16 other boys in his mother's family including his two older siblings, he inherited the condition. He is the first one to survive.

Praveen came a year ago to Chennai with funds raised by well-wishers in Sri Lanka for treatment.

The first bone marrow transplant came from his father, but as it was only a half match, it left him weak within a few months. He was frequently hospitalised and soon he weighed less than what he weighed at birth.

Praveen returned to India and the second time, he received an umbilical cord blood stem cell transplant from a Taiwanese donor. A third transplant, done four months ago, has cured him of the genetic disease. Praveen is weak and though he will survive, he must be protected from infection for several years to help him grow strong.

Finding a match for Praveen was a humungous task that involved a lot of money. The boy's father makes mattresses in Ratnapura, a town three hours drive from Colombo. The entire treatment cost his family Rs. 80 lakh (around Rs. 1.50 crore in Sri Lankan currency).

“The first transplant was only a half match. It was necessary to have a 100 per cent Human Leukocyte Antigen match to build his immune system.

The perfect match for Praveen came from a Taiwanese cord blood donor and we had to pay $8,000 for it. If we were to import it from a US-based cord blood bank we would have paid $45,000. It is because we went through the Indian branch of the US-based cord blood bank that the cost was reduced,” said Revathi Raj, consultant paediatric haematologist, Apollo Specialty Hospital, who has been treating the toddler for the past year.

Only 30 per cent of the time are cord blood stem cell transplants from family members. The rest of the time, the transplants are from unrelated donors. “The advantage of using cord blood stem cells is that the child needs to be protected from infection for a shorter time as within three weeks the body produces new cells,” Dr. Revathi explained.

Although cord blood stem cell transplantation is done in some centres in India it is mostly unaffordable. Families have taken huge loans hoping to save their children's lives. Stem cells are retrieved from cord blood that is discarded as biological waste after childbirth. The blood can be stored for 25 years and the stem cells recovered from it can be used to treat a variety of blood disorders.

There are a few cord blood banks even in India but given the large number of childbirths in the country, if we set up a public cord blood bank by investing a few lakh rupees we will be able to treat conditions such as bone marrow failure, thalassemia and sickle cell anaemia, Dr. Revathi says.

Stem cell transplantation is now a common treatment option for leukaemia. But, families often have to take huge loans for treatment as cord blood is difficult to access.

For instance, Vikram (name changed) took a loan of Rs. 45 lakh for his son, who had ALL and AML leukaemia. During the course of his child's treatment for leukaemia at Apollo Hospital, which lasted six years (the child was diagnosed with the disease when he was a year old) he moved several jobs in search of money to cover treatment costs.

In one company, the health insurance was large enough to cover hospital expenses but the two cord blood stem cell transfusions that his child required cost him Rs. 12 lakh. He took several bank loans besides an advance from his workplace.

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R. SujathaJune 28, 2012

Every one should go for umbilical cord blood stem cells banking either private or public bank,who knows it will works for whom.

from:  amresh
Posted on: Apr 6, 2012 at 14:11 IST

as a researcher in one of the worlds premier medical university / hospital (in USA), I have seen how much the voluntary participation of people can play a role in medicine.

We do not have a very strong policy and system to support / promote this. Also there is not enough awareness among the educated mass. Even those who want to, have difficulty in finding such facilities.

We should set up voluntary banks with an assurance that the donors in case of need in future can avail the cord blood or marrow for free / or very nominal cost, compared to non-donor. This will promote the thought of donating cord blood.

from:  sriram
Posted on: Apr 4, 2012 at 23:06 IST

Tell this to the centre which is harassing people around nukes who are striving to do just that.

from:  Ramaswami Kumar
Posted on: Apr 4, 2012 at 06:51 IST

This is something we should set up. Get the permission from parents that while delivery, they can collect the cord-blood without any hassle to the mother. This has to be practised and if it becomes useful, why waste it ? Who knows, may be the donor himself/herself will be able to use this in future !!

from:  joseph
Posted on: Apr 4, 2012 at 06:49 IST
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