Background

India is grappling with a serious public health issue, the high number of cases of thalassemia and anaemia. India is widely referred to as the "Thalassemia capital of the world" due to its high prevalence of both thalassemia carriers and individuals affected by thalassemia major. This title highlights the significant burden of this health issue in the country. 

Thalassemia is a genetic blood disorder which reduces the body’s ability to produce normal haemoglobin, the protein in the red blood cells that carries oxygen, leading to a reduced oxygen supply to the body’s cells. This may cause a person to feel tired, weak or short of breath. This condition is called anemia. People with thalassemia may have mild or severe anemia. Severe anemia can damage organs and lead to death.

Thalassemia is classified as a trait, minor, intermediate and major, based on severity. A Thalassemia major is the most serious form and requires regular treatment. Individuals with this condition thus deal with a lot of financial, emotional, and physical difficulties which takes a toll on the families too.

India records the highest number of thalassemia major births globally, with 10,000–15,000 new cases each year. This puts a lot of pressure on the healthcare system. The lack of awareness, limited access to testing and treatment, and the high costs of care remain the key challenges particularly for families in the rural and tribal regions.

Anaemia is another major health concern in India. According to the National Family Health Survey (NFHS-5) 2019-2021, women and children account for a significant portion of anemia cases. Factors like poverty, inadequate access to healthcare, and poor nutrition, could be to blame for this. As a result, anaemia primarily affects groups that are already at a disadvantage.

Many studies show a clear link between anaemia and the medical needs of people with thalassemia, especially in states like Gujarat and Maharashtra. This shows that healthcare in these regions is not reaching those who need it most. The overlap of these serious health issues, along with gaps in care, shows that action is urgently needed. What’s needed is a focus on early testing and awareness programs. It is also important to make sure that basic medical care is easier to reach. These steps are key to improving health and reducing inequality in care.