For Jharkhand’s tribal and vulnerable children, access to timely diagnosis and treatment is a right, not a privilege.
Every year, June 19 marks World Sickle Cell Awareness Day, drawing attention to a disease that affects thousands of children in India and Jharkhand but remains widely misunderstood and rarely discussed. Despite its prevalence, limited awareness and inadequate access to care mean that its impact continues to pose serious challenges, particularly among tribal and marginalised communities.
Sickle Cell Disease (SCD) is a significant inherited blood disorder, particularly prevalent in tribal, marginalized, and underserved communities in India and other parts of the world. A child can inherit Sickle Cell Disease if both parents carry the sickle cell trait. Children living with SCD often face debilitating pain, repeated hospitalisations, continued medication and blood transfusions from time to time. Many are unable to attend school consistently or live active lives. Although SCD is manageable, it continues to cause avoidable illness and even death, especially in resource-constrained settings. Recent advances in early diagnosis and genetic counselling offer new possibilities for reducing the burden of SCD, provided they are implemented with cultural sensitivity, care, and a people-first approach.
I recently met an 18-year-old girl from Bedo, Ranchi, currently in her first year of college. She was undergoing a blood transfusion and had low haemoglobin levels. She looked Pale, visibly fatigued, and weak, she shared how she needs to visit the hospital almost every month for medicines and sometimes for blood transfusions. These frequent hospital visits often cause her to miss classes, making it difficult to meet the minimum attendance requirement her college mandates for appearing in exams.
In addition to the physical toll, those affected with Sickle Cell Disease often experience social stigma and discrimination. Due to widespread myths and misconceptions, such as the false belief that SCD is contagious, social acceptance remains low, further isolating them from their communities.
India bears the second-highest burden of SCD globally, after Africa. According to the Ministry of Tribal Affairs, sickle cell is widespread in many tribal groups of India. About 1 in 86 births among tribal population have SCD, the prevalence being higher in Central, Western, and Southern India. However, SCD is found across all ethnicities and communities. In Jharkhand, the launch of the National Sickle Cell Anaemia Elimination Mission on July 1, 2023, marked a significant turning point in the state’s public health efforts. Jharkhand is taking decisive and inclusive action, especially for its vulnerable and tribal populations who are disproportionately affected by the disease.
The state is undertaking universal sickle cell screening for all individuals between the ages of 0 to 40, aiming for early detection and timely intervention. For those diagnosed, Jharkhand is ensuring access to comprehensive support through free regular check-ups, medicines, and counselling services. Health workers are being trained to identify, and manage SCD effectively at the grassroots level, enabling a responsive and informed healthcare system.
In addition, the government is facilitating access to disability certificates and Ayushman Bharat health cards for eligible individuals, further reducing barriers to treatment. Awareness campaigns are also being rolled out to dispel myths and misconceptions that contribute to stigma and social exclusion of those living with the condition. These multifaceted efforts reflect Jharkhand’s deep commitment to breaking the cycle of suffering, empowering communities through knowledge, care, and early intervention.
However, we still have a long way to go. The healthcare system must address long-standing barriers by increasing awareness, regularity of point-of-care testing tools and medical supplies and ensuring adequately trained personnel. To improve early diagnosis and outcomes, targeted screening is essential, particularly for priority groups such as undiagnosed antenatal mothers, newborns and individuals with symptoms including those with a history of multiple transfusions, low haemoglobin levels, or a family history of SCD. Strengthening community awareness, healthcare worker training, robust supply chains, and integrating SCD services into school health and public health programmes are vital steps forward.
UNICEF supports a public health response to SCD that prioritizes early detection, access to care, and supportive services for affected families. Our engagement is guided by values of equity, compassion, inclusion, and community engagement. In Jharkhand, UNICEF supports government efforts to combat sickle cell disease by strengthening health systems, training healthcare workers, for promoting early detection and management. This also includes generating awareness and supporting social and behaviour change communication to reduce stigma.
On this World Sickle Cell Awareness Day, let us commit to a future where no child suffers in silence, where early detection is the norm, and where every person with SCD receives the care, dignity, and opportunity they deserve.
The author is the Chief, Field Office for UNICEF Jharkhand.