In the absence of regular screening of pregnant women to control the inherited blood disorders in the country helped the prevention of hemoglobinopathy based on Bengalur based on Bengalur based on NGOs to avert birth in five countries.
Inherited blood disorders such as thalassymia and sickle -shaped disease (also known as hemoglobinopathy) cause lifelong suffering, including repeated transfusions, painful complications, disability and premature death.
1.9 Lakh projected
In the last four years, the NGO Foundation, Sankalp India Foundation has screened over 1.9 lake women in 81 districts via Maharashtra, Madhya Pradesh, Gujarat, Karnataka and Andhra Pradesh. It was possible to prevent 201 birth with severe hemoglobinopathies. These were 91 sickle -shaped diseases, 76 Major Thalassymia, 27 sickle thalassemia and seven other hemoglobinopathies.
Proactive measures, including genetic counseling and prenatal screening, allowed families to make informed decisions about continuing or ending pregnancy based on the results of fetal tests.
28 from Karnataka
201 birth includes 28 of Karnataka, 123 from Maharashtra, 12 from Andhra Pradesh, 13 from Gujarat and 25 from Madhya Pradesh. “The number of affected births that has been prevented corresponds to the carriers (mutated genes that cause hemoglobinopathy but do not have the disease itself) in these states,” said Rajat Kumar Agarwal, President of the Sankalp India Foundation, on Saturday Hind.
Mr. Agarwal pointed out that the program was a scalable model of national importance, said: “When India is committed to the rectification of sickle cells by 2047, this program offers a work plan to make this vision of reality.”
This impact was possible only because of a strong partnership with national medical missions in five countries, district health authorities, local healthcare workers, donor institutions and other participating parties. This reflects the model of cooperation between the public and private sectors rooted in justice, trust and local leadership, he said.
Up to 87 Center coordinators and six regional coordinators trained and built into the birth/ gynecological departments in district hospitals on the first line. “They advised their parents to mobilize early testing, support prenatal diagnosis, and offer the continuity of care with unwavering compassion and clarity,” he added.
The most difficult decision
The couples that have been advised and tested stated that they had no idea that they were both carriers. “After genetic testing, the ending of pregnancy was the most difficult decision of our lives. However, we were not ready to see our child suffering from lifelong,” said Jayyshree and M. Ravi, who were advised and tested through a non -governmental organization in the Tumcura District Hospital.
“The program gave us knowledge and decisions to ensure a healthy future for our child,” said Seema and Mahesh of Alirajpur in Madhya Pradesh.
Sundar Periyavan, Director of the Laboratory Sankalp Labs and former head of hematology and transfusion medicine in Nimhans, said that accurate and timely diagnostics is a rescue rope of this program.
Fast and accurate
“Every hour counts and our laboratories provide fast, accurate and performed results through high -performance liquid chromatography (HPLC). Families receive clear answers when it matters most,” the doctor said.
The clinical framework and quality systems of this program were conceptualized by Lawrence Faulkner, Medical Director of Sankalp and founder Cure2children, Italy, International Hematologist.
“The Sancalp Antinatal Screening model, anchored in accurate diagnosis and community involvement, transformed the way we approach hemoglobinopathy,” Dr. Faulkner.
(Pairs names have been changed).
Published – July 12, 2025 9:25
