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.