immunodeficiency (SCID). The Sri Lankan 'bubble baby', suffered from a
condition which forced himto 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 weakwithin a few months. He was
frequently hospitalised and soon he weighed less than what heweighed
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 himof 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 humungoustask 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 SriLankan 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, consultantpaediatric
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
familymembers. 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 withinthree weeks the body produces new cells," Dr. Revathi
explained.
Although cord blood stem cell transplantation is donein 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 treata variety of blood disorders.
There are a few cord blood banks even in India but given the large
number of childbirths in the country, ifwe 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 isnow 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 (namechanged) 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 atApollo Hospital, which lasted six years (the
child was diagnosed with the disease when he was a year old) he moved
severaljobs in search of money to cover treatment costs.
In one company, the healthinsurance 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.
Keywords: evere combined immunodeficiency , public blood bank/
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