CHENNAI: Though thalassaemia patients are fewer in Chennai compared to some northern cities, stigma and low awareness are pegging back efforts to provide comprehensive care and support to victims.

There are 150 known thalassaemia "majors" (who require lifelong blood transfusion and drugs to lower iron in bloodstream) in the city, but haematologists say the figure may be more, since many may be undiagnosed or some children may have died before diagnosis.

Specialists warn that the numbers could increase if public awareness about reducing the number of babies being born with the genetic blood disorder is not increased.

As opposed to "majors," there are thalassaemia "minors," who can lead normal lives. When both spouses are carriers, the foetus should be tested to find out whether the child would be born as a thalassaemia major. If that is the case, aborting the foetus is the best option, specialists said.

Genetic condition

Thalassaemia is a genetic condition that occurs when a person is unable to produce the required quantity of haemoglobin necessary to carry oxygen from the lungs to the rest of the body. It is a condition that requires lifelong blood transfusion and medication for reducing iron level in the blood.

In India, three per cent of the population is categorised as "thalassaemia minor," and if two of them are married, one of four children born to them would be a thalassaemia "major."

Of nearly 7,000 to 10,000 children born with thalassaemia every year, a majority are from the Punjabi, Sindhi and Gujarati communities.

Common fold

"In Chennai, we are trying to bring the known cases under a common fold," said Dr. Revathi Raj, a paediatric haematologist and spearhead of the Thalassaemia Welfare Association, Chennai, a support group comprising patients and their family members.

The Association's objective is to "raise awareness about thalassaemia, support families with members afflicted with the condition, prevent future births of children with the disorder and generally improve the care of thalassaemia patients in Chennai."

A public-private partnership model is mooted in the long-term to mobilise the huge funds required for a programme that involves blood transfusion costs of about Rs. 5,000 per month per patient along with the prohibitive cost of chelation (reduction of iron through drugs).

"Awareness among people here is very poor; even relatives of patients who are aware of thalassaemia tend to keep it to themselves," said V. Pushpa, retired Professor of Paediatric Haematology at the government-run Institute of Child Health. "In fact, the stigma is so high that families of patients registered with us prefer not to have letters addressed to them in envelopes with the name of the Association printed on them," said Dr. Revathi.

M. B. Agarwal, a hemato-oncologist from Mumbai who was here to speak at a seminar on thalassaemia, said the disease was curable only by a bone marrow transplant, the emphasis should be on education of the public, awareness and prevention.

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