Due to a combination of geographic isolation, economic status, societal attitudes, traditional beliefs, and provider inadequacy, tribal populations throughout India have often been denied access to allopathic health services. Comprising of around 10% (100 million) of India's population, they demonstrate some of the poorest health outcomes in India.
With a large population and consanguineous marriage practices, there is a dangerously high prevalence of genetic disorders among tribal populations in India. The presence of sickle cell anemia among tribal populations has surged to the forefront as a critical public health problem among tribal groups. A congenital haemolytic anemia that results from a defective haemoglobin molecule, sickle cell disease causes red blood cells to roughen, become sickled, and rupture [haemolyse] leading to sickle cell crisis. This results in an impaired circulation and chronic ill health. Half of the patients with sickle cell disease die before 20 years of age due to organ failure from repeated crises.
Epidemiological studies confirm that sickle cell anemia is prevalent in the tribal populace, the prevalence of heterozygotes [carriers] for the sickle gene is calculated to be over 20% in some areas. The sickle gene was first described in tribal groups in South India, and studies illustrate its presence in various parts of India including Tamil Nadu, Madhya Pradesh, Orissa, and Kerala. Genetic diseases have traditionally received little attention from urban health services in India, and even less so in tribal areas. As a result, virtually all studies carried out regarding tribal populations and sickle cell anemia have strongly recommended that genetic health services be integrated into existing primary health care and medical services to combat the disease. Few healthcare delivery systems, however, have implemented these recommendations. As such, our Foundation and Sickle Cell Center concentrates on developing a comprehensive sickle cell management system for the tribal populations of the Nilgiris in South India, made up of over 25,0000 tribals divided into 5 tribes.