Screening for the sickle cell gene in Gujarat, India: a village-based model

The sickle cell gene in India reaches its highest prevalence among the tribal people, many of whom are marginalized in the Indian society, living in remote rural areas which are often in the hilly regions of the Deccan plateau. Delivery of all services including health care presents special challenges which are addressed in this study by an outreach program and a mobile clinical unit. Another concern among the tribal people, a suspicion of centrally provided services conceived as being imposed from the outside, has been addressed by the concept of the Sickle Cell Swa (self) Suraksha (protection) Abhiyan (movement), which seeks to educate tribal communities in sickle cell (SS) disease so that the request for screening emanates from the community itself. This program has now screened 7,307 subjects in nine villages, finding the sickle cell trait in 23.7 % (range 18.5-30.9 %) and probable SS disease in 112 subjects. The organization of the program is described along with the delivery of results on a laminated card displaying the hemoglobin genotype, advice related to the genotype, blood group information (specifically requested by the villagers), contacts within the village sickle cell committee, and clinical contacts for medical advice. In addition, a local villager has been given basic health care training to regularly visit and monitor cases of SS disease and refer those with significant complications to the hospital coordinating the screening program. It is too early to determine the success of this program, but it represents a village-based model of detection of the sickle cell gene and care for cases with the disease which is accepted by the affected communities and may have broader implications for sickle cell disease in India.