Prevention: Eliminating the Burden Before It Begins
The Need for Prevention
India records over 50,000 births annually of children affected by thalassemia and sickle cell disease—two severe, inherited blood disorders. These conditions cause chronic illness, pain, repeated hospitalizations, and in many cases, premature death. They also place a substantial financial and emotional burden on families and the healthcare system.
Crucially, both thalassemia and sickle cell disease are entirely preventable through timely screening and counselling during pregnancy. Prevention is not only possible—it is proven, effective, and urgently needed.
Sankalp's Prevention Model
Sankalp has developed and implemented a comprehensive and sustainable prevention model over the last 13 years. The program is designed to serve populations in underserved and remote regions and is integrated into existing public health systems. It is both scalable and cost-effective.
Key features of the model include:
Antenatal Screening and Counselling: Identification of carriers among pregnant women and their partners, followed by genetic counselling to support informed decision-making.
District-Level Prevention Centres: Operational units located within government hospitals, staffed by trained coordinators and equipped with essential diagnostic infrastructure.
Integrated Public Health Collaboration: Partnerships with state governments and local health departments to ensure reach, alignment with public health priorities, and long-term sustainability.
Technology-Enabled Systems: Use of digital platforms, including Sankalp’s proprietary “StopThal” system, to ensure diagnostic accuracy, real-time alerts, transparent processes, and data-driven decision-making.
Measurable Impact
In the financial year 2024–25, Sankalp’s program screened 130,273 pregnant women across 80 districts in Maharashtra, Madhya Pradesh, and Gujarat. As a result, 131 affected births were prevented. Each of these cases represents not only a life spared from suffering but a significant cost saving for the healthcare system and emotional relief for families.
Cost-Effectiveness
The intervention is among the most cost-effective in public health:
The cost of screening and counselling one family is approximately INR 550.
Operating a district-level prevention centre for one year costs INR 11,00,000.
This low-cost, high-impact model demonstrates the potential for national scale with limited financial input, especially when aligned with public systems and supported by technology.
Stories of Impact
The true impact of the program is seen in the lives of families who now have the confidence to raise healthy children. Families that once faced repeated trauma—losing children or navigating difficult medical decisions—now benefit from timely support and clear guidance. These stories illustrate the human transformation possible through effective prevention.
The Way Forward
Sankalp is positioned to expand this model to more districts across India. With systems, training, partnerships, and results already in place, the program is ready to scale. However, increased support is critical to achieve broader national impact.
Immediate priorities include:
Increasing coverage from 1 percent to 5 percent of pregnancies in high-burden areas
Expanding operations to sub-district health centres
Streamlining diagnostic timelines to under 72 hours
Strengthening AI-supported decision systems within the StopThal platform
Partner with Us
Sankalp invites partners, donors, and institutions to join us in scaling this initiative. Every contribution, every partnership, and every step taken now moves us closer to a future where no child is born into a life of preventable suffering.
Together, we can eliminate the burden of thalassemia and sickle cell disease from future generations