♦ Thalassemia is an inherited blood disease, usually characterized by abnormal production of hemoglobin in the body.
♦ The abnormality leads to improper oxygen transport and destruction of red blood cells. It has a wide range of effects on the human body, such as iron overload, bone deformities, and in severe cases can cause heart disease.
♦ There is no cure for the disease, and patients with thalassemia need regular blood transfusions to extend their life.
♦ India is the thalassemia capital of the world, with 40 million carriers and more than 1,00,000 patients. There is no prevention and control plan at the national level.
♦ In India, preventive health check-ups are not very common, and people with thalassemia unknowingly pass this genetic disease to their children.
♦ More than 10,000 patients across the country died before the age of 20 due to lack of access to treatment.
♦ The Center for Health Ecology and Technology (CHET) formulated the first draft of India’s rare disease policy and submitted it to the Karnataka government in March 2016.
♦ Neighboring Pakistan passed a bill in February requiring that relatives of thalassemia patients must be tested for carriers. Dubai, Abu Dhabi and Saudi Arabia also have similar systems.