12-07-2025
Bengaluru-based NGO's hemoglobinopathy prevention programme has averted 201 affected births across five States
In the absence of regular screening for pregnant women to check inherited blood disorders in the country, a Bengaluru-based NGO's hemoglobinopathy prevention programme has helped avert 201 affected births across five States.
Inherited blood disorders such as thalassemia and sickle cell disease (also known as hemoglobinopathies) inflict lifelong suffering, including repeated transfusions, painful complications, disability, and early death.
1.9 lakh screened
In the last four years, the NGO, Sankalp India Foundation, screened over 1.9 lakh women in 81 districts across Maharashtra, Madhya Pradesh, Gujarat, Karnataka, and Andhra Pradesh. It was possible to prevent 201 births with severe hemoglobinopathies. These included 91 sickle cell disease, 76 thalassemia major, 27 sickle-beta thalassemia, and seven other hemoglobinopathies.
Proactive measures, including genetic counseling and prenatal screening, enabled families to make informed decisions about continuing or terminating pregnancies based on fetal test results.
28 from Karnataka
The 201 births include 28 from Karnataka, 123 from Maharashtra, 12 from Andhra Pradesh, 13 from Gujarat, and 25 from Madhya Pradesh. 'The number of affected births that have been prevented corresponds to the carrier (of mutated genes that cause the hemoglobinopathies but do not have the disease themselves) rates in these States,' Rajat Kumar Agarwal, president of Sankalp India Foundation, told The Hindu on Saturday.
Pointing out that the programme is a scalable model of national importance, Mr. Agarwal said, 'As India commits to eliminating sickle cell disease by 2047, this programme offers a working blueprint of how to make that vision a reality.'
This impact was only possible because of strong partnerships with National Health Missions in the five States, district health authorities, local health workers, donor institutions, and other stakeholders. It reflects a model of public-private collaboration rooted in equity, trust, and local leadership, he said.
As many as 87 centre coordinators and six regional coordinators trained and embedded in the Obstetrics/ Gynaecology departments in district hospitals were at the frontline. 'They counselled parents-to-be, mobilised timely testing, supported prenatal diagnosis, and offered continuity of care with unwavering compassion and clarity,' he added.
Hardest decision
Couples, who were counselled and tested, said they had no idea they were both carriers. 'Following the genetic testing, terminating the pregnancy was the hardest decision of our lives. But, we were not prepared to see our child suffer lifelong,' said Jayshree and M. Ravi, who were counselled and tested through the NGO at Tumkuru district hospital.
'The programme gave us knowledge and choices to ensure a healthy future for our child,' said Seema and Mahesh from Alirajpur in Madhya Pradesh.
Sundar Periyavan, lab director of Sankalp Labs and former Head of Haematology and Transfusion Medicine at NIMHANS, said accurate and timely diagnostics are the lifeline of this programme.
Quick and precise
'Every hour counts, and our labs ensure fast, accurate, and actionable results through high-performance liquid chromatography (HPLC). The families receive clear answers when it matters most,' the doctor said.
The clinical framework and quality systems of this programme were conceptualised by Lawrence Faulkner, medical director of Sankalp and founder of Cure2Children, Italy, an international haematologist.
'Sankalp's antenatal screening model, grounded in precision diagnostics and community engagement, has transformed the way we approach hemoglobinopathy prevention,' said Dr. Faulkner.
(Names of the couples have been changed).
