Beyond the screening: The need for health systems intervention for prevention and management of sickle cell disease among tribal population of India

Abstract

Globally, sickle cell disease (SCD) is one of the major public health problems. In India, it is more prevalent in tribal communities. Tribal communities are socio‐economically disadvantaged and constitute 8.6% of India's population. The health and health care seeking of these communities is very poor. Though efficacious interventions are available to manage SCD, they are not reaching these people and no comprehensive programme is in place. The objective of this analysis is to demonstrate the burden of SCD among the tribes in two Indian states of Andhra Pradesh and Telangana, as a case and to highlight the need for public health intervention and health systems strengthening in the country to prevent and manage SCD. One in 10 persons of tribal population of these states carries Hb S gene. A substantial number of children are born every year with the condition. Mostly, the research is limited to screening. Hence, a programme with early detection and an appropriate referral system should be developed. The primary health care system should be strengthened to screen and manage SCD persons with good disease management practices and appropriate community mobilisation activities. The programme should partner with traditional healers and community leaders. People should be encouraged to seek treatment; and counselling for prevention. The study warrants human‐centric approaches during the interventions to address the possible threat of fear of being stigmatised. Thus, the transition of evidence‐based interventions into the programme and practice can improve the lives of people with SCD, particularly the tribal population.

Prevalence of sickle cell disease among children of tribal population in India: Feasibility of screening at community level in low‐resource settings

“…The screening of SCD, particularly in remote tribal areas is almost absent. 9 This pilot study is part of a multicentric study to develop an effective intervention model for SCD patients in tribal communities through the government health care system. 10 This study aimed to establish a model of screening, and to report the prevalence of SCD and trait among children aged 1-5 years.…”

The Potential of mHealth as a Game Changer for the Management of Sickle Cell Disease in India

“…With regard to SCD, various control programs have been in operation in India for an extended period of time. However, due to the lack of an organizational referral system and standard treatment guidelines for the management of SCD, most of these programs are limited to the screening of patients [40]. It has been observed that most patients seek treatment only when they have an acute sickle cell crisis.…”

“…In 2016, the Indian government aimed to increase the accessibility of hydroxyurea in district hospitals located in high-prevalence areas and issued guidelines for the prevention and control of hemoglobinopathies [51]. However, due to implementation gaps, the program could not be initiated in the majority of states, particularly in tribal areas [40]. Recently, a draft policy was prepared, which advocates for the improvement of SCD treatment centers in all districts and ensures a free supply of hydroxyurea and penicillin to low-income patients [52].…”

Sickle cell disease-related knowledge and perceptions of traditional healers in tribal communities in India: implications on sickle cell disease programme

“…Despite the huge burden of SCD in the country, particularly among vulnerable communities like tribes, the control programmes are still in draft format, and no health systems approach exists to deal with the burden (Government of India 2021, Raman et al 2021). The primary health care system, which primarily caters to the preventive and curative services to the tribal populations, totally ignored SCD, and there are no treatment or referral systems in most tribal areas (Geethakumari et al 2021). However, there is growing attention that leads to the development of an SCD programme (Government of India 2016).…”

“…For accessing modern health care, people seek advice from their traditional healers. Thus, traditional healers are essential in generating people's awareness and acceptance of health care services (Geethakumari et al 2021).…”