The Tribal India Health Foundation’s TIHF/GAH Sickle Cell Disease Center

The Problem

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.

Plan of Action

To improve health in tribal India, I initiated two organizations in 2004, namely the Tribal India Health Foundation, and its TIHF/GAH Sickle Cell Disease Center. The Tribal India Health Foundation is a 501(c) organization dedicated to providing existing tribal health initiatives monetary and medical resources to improve the health status of their target populations. The Foundation sends monetary donations and medical supplies including sutures, gloves, gauze, bandages, and microscopes to tribal health programs in South India. Through the Foundation’s provision of material and monetary support, tribal populations in the community are healthier and better informed. Over the past five years, the Foundation has sent over 1000 surgical sutures, 2000 gloves, a microscope, a blood analyzer, and four pulse oxymeters to the tribal hospitals in Sittilingi and in the Nilgiris. Our provisions have enhanced the clinical services provided in tribal areas with a combined population of over 35,000. The Foundation's Sickle Cell Center, administered jointly with the Gudalur Adivasi Hospital, has screened over 5000 individuals for sickle cell disease and has over 160 patients on treatment. We aim to complete screening and identification of the remaining 20,000 individuals in the next few years. We have also initiated comprehensive education sessions with 20 village-based health workers, and they are deployed to the villages to educate tribal groups on this fatal disease. Thus, the target population of over 25,000 is being empowered to recognize and manage this nefarious disease. Additionally, we have begun expanding our reach and providing critical sickle cell drugs to rural hospitals in the neighboring state of Kerala.

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