Need for a National Policy on Thalassemia

Thalassemia is a genetic blood disorder that affects the production of haemoglobin in the body, resulting in severe anaemia. The irregularity results in improper oxygen transport and destruction of red blood cells. The term thalassemia was derived from the Greek word "thalassa" meaning the ocean as the patients were initially identified along the coast of Mediterranean Sea by leading scientists Lee & Cooley in 1925. The first case of thalassemia in India was reported in 1938. Thalassemia has no cure and people living with this disease require regular blood transfusions as an effective measure to prolong life.

India is the thalassemia capital of the world with around 40 million carriers. Statistics reveal that in India thalassemia major affects over 1, 00,000 people and over 8,000 reported thalassemia births take place every year. However, there are many more unreported cases as well. Around 1,00,000 patients across the country die before they turn 20 due to the inaccessibility of proper treatment. Despite all this, there has been no move to put in place a prevention and control programme at the national level.

Thalassemia patients need not just free blood transfusion but free diagnosis tests and iron chelation medicines and other supplements, which are expensive.

With preventive health checks not being the norm in India people suffering from thalassemia are unknowingly passing on this genetic disorder to their children. It can be prevented just if gynecologists become more vigilant and screen for thalassemia in every pregnant woman.

The need of the hour is to have a National Policy on thalassemia, which will help in not just creating awareness about the disease but also ensure treatment for all and strategies to prevent its spread. PSM-India has been working hard to ensure that each patient in India, be it anyone suffering from Thalassemia or any other illness must get access to the adequate and effective healthcare and access to treatment. In order to prevent, control and provide adequate treatment for patients, and to create awareness about the disease, we must need a National Plan on Thalassemia at the earliest.