An initiative to make thalassemia screening a routine part of antenatal care and ensure its diagnosis and prevention in the country has been launched, according to those associated with the efforts.
The Federation of Obstetric and Gynaecological Societies of India (FOGSI) and Veha Foundation on Thursday launched the initiative, titled Project MUKTA (Mission to Unite and Keep Thalassemia Away), in Pune.
Thalassemia is a genetic disorder affecting the body's ability to produce haemoglobin and healthy red blood cells. This deficiency leads to anaemia, causing fatigue and weakness.
India accounts for the highest number of thalassemia major cases globally, with 1-1.5 lakh children living with the condition, and 10,000-15,000 babies born with it every year, said Dr Sunita Tandulwadkar, president of FOGSI.
Around 42 million Indians are carriers of the "ß-thalassemia" trait, putting millions of families at risk, she said.
"'MUKTA' means 'liberated,' and that's what we are striving for - a future where no child has to suffer from a condition we have the power to prevent," said Dr Tandulwadkar, unveiling the guidelines for thalassemia screening for pregnant women.
She said the guidelines recommend that every untested pregnant woman undergo a simple blood test called HPLC in the first trimester. "If both partners are found to be carriers, doctors can provide counselling and further testing to help prevent the birth of an affected child," she said.
FOGSI's immediate past president, Dr Jaydeep Tank, said, "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 and allow couples to make informed decisions." The initiative will be rolled out in 10 cities by the end of 2025, with plans to expand to over 30 cities through continuing medical education sessions, awareness campaigns and national conferences, he said.
FOGSI secretary general Dr Suvarna Khadilkar said the project would focus on regions with high prevalence, while Veha Foundation director Rumana Hamied stressed the need for tangible action that "liberates" future generations from a preventable condition.
"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," Hamied said.
The project will train 70-80 doctors as "master trainers", who will work with medical colleges, diagnostic centres and professional associations to strengthen prevention efforts, according to a release.
Dr Pooja Lodha, national convenor of Project MUKTA, said the guidelines would form the technical base of the programme and empower grassroots doctors to integrate thalassemia screening into routine antenatal care.
