Thalassaemia in Bombay: The role of medical genetics in developing countries

ABSTRACT

This study of 200 families with thalassaemic children in Bombay showed that these children's treatment and needs place a significant, unavoidable and increasing demand on the public health services. At the same time, owing to the potentially large number of patients and the difficulties of long-term management, the situation is characterized by evasion of the problem, failure of planing, no provisions for prevention, and inadequate treatment leading to premature death among the affected children. The burden on such families is greater in developing than in developed countries because, besides caring for the chronically sick child, their lives are dominated by the high cost of treatment, often amounting to 20-30 per cent of the income for many families. Seven mothers with no healthy children and 27 with only one healthy child had been sterilized; 90 per cent of reproductive-age couples felt that prenatal diagnosis was a necessity. Also, ignorance and prejudice in the community led to social isolation for the forty families