Sickle Cell Anemia Identification and Management Program (SCIMP)
Sickle cell anemia is a critical issue in India, home to over 50% of global carriers, primarily among Adivasi tribes. Each year, 300-400,000 Indian children are born with this condition, risking organ disease and even early death without proper treatment. Our project aligns with national priorities to raise awareness and provide testing and treatment for this disease.
The Problem
Sickle Cell Anemia (SCA) is an autosomal recessive disorder caused by a genetic mutation in the hemoglobin β-gene. Patients with one abnormal allele have sickle cell trait (SCT) and those with two abnormal alleles develop sickle cell disease (SSD). The disorder causes hemolytic anemia with dysfunction in organs throughout the body resulting in substantial acute and chronic disability (1). Patients with SSD develop heart failure and kidney dysfunction including impaired urinary concentration, hypertension, and progressive loss of kidney function (2). Even patients with SST are at increased risk of these complications (3). Early identification of patients with SST and SSD can enable prompt implementation of healthy lifestyle choices and initiation of therapeutic interventions that can delay or prevent cardio-renal sequelae.
After the United States, India ranks second in contribution to the global health burden attributable to SCA, and over 40,000 infants were born with the hemoglobinopathy in 2010 (4). The regional prevalence and health consequences of SSD has been mapped throughout the India subcontinent. The Adivasi, or scheduled tribe population – Particularly Vulnerable Tribal Groups (PFTGs) – living in remote rural villages are disproportionately affected by undernutrition and SCA, thereby prevailing in the poorest wealth deciles denominated as socially and economically vulnerable (5). A 2020 study on children’s hemoglobin levels in the community confirmed Adivasi children lagging behind national average with a high prevalence of undernutrition – which is a leading cause of the high incidences of moderate and severe anemia. Indeed, the Adivasi tribal community of Maharashtra has one of the highest rates of malnutrition and infant mortality in the world, and one of the highest concentrations of Sickle Cell Anemia among children (6).
In recognition of the profound health and socioeconomic costs of SSD, the Indian government has prioritized programs that address this pressing clinical need. But the government needs and has requested partnership from GPM in order to reach their goals.
Our Solution
The goal of this proposal is to develop a SCA screening and treatment program in the tribal village region of Mokhada, Maharashtra, in collaboration with local health authorities, in order to mitigate the problem of SCA in the area. In order to reach this goal, the program aims to achieve the following objectives:
(1) Promotes public awareness and education about the disease;
(2) Conducts SSD outreach and mapping among marginalized communities;
(3) Facilitates SSD screening and early diagnosis;
(4) Implements early treatment;
(5) Creates referral pathways to centers that can provide necessary tertiary level care for more severely affected children.
Impacts and Outcomes
The program anticipates the following significant outcomes in the first year:
• Creating a comprehensive data map of the Mokhada community of 150,000 people (approximately14,000 households) around their understandings of SSD and other related diseases, as well as their risk factors, in collaboration with local health authorities.
• Ensuring that 14,000 households have access to medical coverage.
• Testing and diagnosing 10,000 people in Mokhada for SSD
• Providing crucial medical treatment for an estimated 1,000 people
• Providing referral pathways for an additional 2,000 people.
• Improving the SSD symptoms and risk factors of 300 infants through Infant Malnutrition intervention.
• PLUS: Reducing the overall incidence of SSD in Mokhada by 25-50% over 3-5 years.
The program also benefits from the unique relationship that GPM has with local residents, community leaders, and health authorities. The SCA screening program leverages the close interaction that GPM has established with local physicians, nurses, and health care workers in the Mokhada region. It uses screening for SSD, a national priority, as a portal for systematic screening for cardio-renal disease, an increasingly prevalent problem in developing countries and a significant contributor to the global health burden.
In addition, the program will incorporate state-of-the-art on-site diagnostic methods and integrate testing into the communities where people live. These features will make it more likely to be accepted by residents and to have a meaningful impact on their overall health.
Partners
The Sickle Cell Anemia Project is funded by a grant from leading biopharmaceutical company Bristol Myers Squibb as part of $1.8 million initiative to advance health equity by addressing social determinants of health (SDoH) in four countries with underserved patient needs, including Brazil, India, Thailand, and the United Kingdom. (See Bristol Myers Squibb press release HERE. ). We are also grateful to our partners United Way, Mumbai for offering to consult with us and share their experience in Sickle Cell Anemia projects in other regions of India.
Our teams work closely with the government District Health Officer as well as the sub-district Taluka Health Officer. Gabriel Project Mumbai greatly values the guidance and directives of the relevant government health authorities.