Nationwide initiative to prevent thalassemia launched

NEW DELHI: India, often referred to as the Thalassemia capital of the world due to its highest number of children affected by Thalassemia Major a severe inherited blood disorder, has now seen a major step towards prevention. A nationwide initiative has been launched to screen and prevent the condition at the earliest stage so that couples at risk can make informed choices. It is estimated that one lakh to 1.5 lakh children in India are living with the disease, which impacts the bodys ability to produce haemoglobin and healthy red blood cells. Moreover, around 42 million Indians carry the -Thalassemia trait, putting millions of families at risk. Given these challenges, prevention through early identification of carriers and at-risk couples remains the most effective strategy to reduce disease incidence. To address this, the Federation of Obstetric and Gynaecological Societies of India (FOGSI) comprising leading Indian obstetricians and gynaecologists with over 46,000 members and 286 societies nationwide along with the Veha Foundation, launched the Good Clinical Practice Recommendations (GCPR) for universal antenatal thalassemia screening, prevention and diagnosis in India. The new guidelines recommend that every untested woman undergo a simple blood test called HPLC within the first three months of pregnancy to screen for thalassemia. If both partners are found to be carriers, doctors can provide early counselling and further testing to help prevent the birth of an affected child. These guidelines were introduced as part of Project MUKTA (Mission to Unite and Keep Thalassemia Away), a nationwide initiative to make thalassemia screening a routine component of antenatal care. The initiative aims to cover 10 cities by the end of 2025 and conduct continuing medical education (CME) sessions for doctors. Later, it will be scaled up to cover over 30 cities by integrating awareness campaigns and hosting sessions at national conferences. Speaking to this paper, Dr Sunita Tandulwadkar, President of FOGSI, said, India is unfortunately recognised as the Thalassemia capital of the world. Each year, nearly 10,00015,000 children in our country are born with Thalassemia Major, a condition that is extremely difficult to manage and treat, yet entirely preventable. We strongly believe that Project MUKTA is a landmark initiative in this direction. As gynaecologists, we are responsible and able to protect future generations. Together, we can ensure that India moves towards becoming a Thalassemia-free nation, she added. She said the initiative will unite the efforts to achieve zero Thalassemia births. Through the vast FOGSI network across 31 cities, we will raise awareness, transform clinical practice, and build momentum in private healthcare facilities. Once firmly established, this initiative will be ready to expand in partnership with the government to reach the public sector as well. She also said that the government should work to ensure that HPLC a blood test to diagnose genetic blood disorders like sickle cell disease and thalassemias is made a mandatory part of antenatal testing for every woman. This is not just a programme, it is a movement to secure healthier lives and a brighter future for countless families in India, she said, adding that no child has to suffer from a condition that can be prevented. Highlighting the urgency of action, Dr Jaydeep Tank, Immediate Past President of FOGSI, added: Thalassemia is a preventable condition, yet many families in India are unaware of the risk until it is too late. A simple screening test can identify carriers, allowing couples to make informed decisions and prevent the disease from being passed on to their children. The initiative will also involve medical colleges, diagnostic centres and professional associations. Rumana Hamied, Director of Veha Foundation, added: Behind every statistic is a life, a child and a family. Our goal is not just to raise awareness, but to drive tangible action that liberates future generations from a preventable condition. Under the initiative, 7080 doctors will be trained as master trainers who will work with doctors, facilities and communities across India. Dr Pooja Lodha, National Convenor, Project MUKTA, added: These guidelines will form an important technical base for the project. By empowering doctors at the grassroots, we can ensure early detection and prevention become a natural part of antenatal care.