Strengthening comprehensive and integrated care of hemoglobinopathies
Hemoglobinopathies—including sickle cell disease (SCD), thalassemia, and other inherited blood disorders—are among the most common genetic conditions worldwide. More than 5% of the global population carries a gene associated with a hemoglobin disorder, resulting in an estimated 300,000–400,000 children being born annually with severe forms of these conditions.
In India, hemoglobinopathies remain a major public health challenge, disproportionately affecting tribal, rural, and underserved communities. Many individuals continue to face barriers to early diagnosis, quality treatment, and long-term care.
PATH works with governments, health care institutions, researchers, and communities to strengthen integrated hemoglobinopathy services through health systems strengthening, diagnostic innovation, capacity building, patient-centered care, and evidence generation. Our work spans prevention, screening, diagnosis, treatment, and long-term management, with a focus on building sustainable solutions within public health systems.
Our work
1. Addressing the burden of sickle cell disease in India
PATH is supporting governments in strengthening the prevention, diagnosis, treatment, and long-term management of sickle cell disease through health systems strengthening, innovative diagnostics, health care worker capacity building, improved access to treatment, and patient-centered support mechanisms. Working closely with public health systems and communities, the initiative aims to build sustainable models that improve access to quality care and strengthen the continuum of care for people living with SCD.
In Maharashtra, PATH, in collaboration with the state's public health department, is supporting the National Sickle Cell Anaemia Elimination Mission (NSCAEM). PATH's work focuses on NSCAEM's comprehensive approach to addressing SCD through enhanced services and innovative strategies in high-prevalence districts, including Nandurbar and Gadchiroli.
Read the project brief here
2. Strengthening integrated hemoglobinopathy care with a focus on thalassemia
PATH is also working with state governments and partners to strengthen comprehensive thalassemia prevention and care through integrated screening strategies, early diagnosis, genetic counseling, patient management, and health systems strengthening. The initiative focuses on building scalable, evidence-based approaches that improve access to services and support long-term care within the public health system. This work is supported through Bristol Myers Squibb Foundation grant to tackle hemoglobinopathies in India, enabling PATH to accelerate progress across both states.
Read the project brief here
Publication date: June 2024
Landscape for sickle cell disease testing
This document, developed with support from Novartis, is intended as a practical resource for public health program managers, policymakers, administrators, and other stakeholders working to address SCD in India and globally.