Time for a national policy on thalassaemia


As the number of thalassaemics grows in India, a prevention and control programme is nowhere in sight

Unlike most of her peers, Namitha A. Kumar, a PhD holder from a reputed research institute in India, considers herself incredibly lucky to be alive. She suffers from thalassaemia, a rare genetic blood disorder, and lives in a country that currently has no national plan for people like her.

Dr. Kumar, along with Vijay Chandru from the Centre for Health Ecologies and Technology (CHET), was instrumental in framing the first ever draft policy in India for rare diseases with help from the Centre for Human Genetics. The policy was submitted to the Karnataka government in March 2016.

Thalassaemia is a genetic blood disorder commonly characterised by the abnormal production of haemoglobin in the body. The abnormality results in improper oxygen transport and destruction of red blood cells. It has wide-ranging effects on the human body like iron overload, bone deformities and in severe cases can cause heart diseases. The disease has no cure and people living with thalassaemia require regular blood transfusions as an effective measure to prolong life.

Ahead of World Thalassaemia Day on May 8, experts say India is the thalassaemia capital of the world with 40 million carriers and over 1,00,000 thalassaemia majors under blood transfusion every month. Despite this, there has been no move to put in place a prevention and control programme at the national level.

With preventive health checks not being the norm in India, people suffering from thalassaemia are unknowingly passing on this genetic disorder to their children. Whereas in the neighbouring Pakistan, a Bill making carrier testing compulsory for relatives of thalassaemia patients was passed in February. A similar system is in place in Dubai, Abu Dhabi and Saudi Arabia.

While the number of thalassaemics is growing in India, the effort to provide patients better health care is largely spearheaded by the private sector and non-governmental organisations. Over 1,00,000 patients across the country die before they turn 20 due to lack of access to treatment. The first case of thalassaemia in India was reported in 1938 and every year 10,000 children with thalassaemia major are born in India.

Dr. Kumar has been working to ensure that other thalassaemic patients in India get the same opportunities that she did.