Sickle Cell Disease (SCD) is, an inherited blood disorder, poses a major health burden in India. However, it remains neglected, with the ongoing pandemic and increasing burden on healthcare infrastructure in the country. This contributes to low levels of awareness, reduced screening coverage and a paucity of data which hinders research and treatment innovations.  In order to advance SCD as a public health priority and enable timely diagnosis and effective disease management, there is an urgent need to scale screening of newborns and pregnant women as a first step of a holistic strategy to better support SCD patients and limit their complications.
India is estimated to have the second highest national burden of sickle cell disease in the world. SCD prevalence varies significantly across the country, with particular prominence in tribal groups. The condition is reported to be most prevalent in central India, across the “sickle belt”, stretching from Gujarat to Odisha, with the states of Chhattisgarh, Bihar and Uttar Pradesh estimated to have the highest prevalence. Recently, its prevalence has been observed across non-tribal populations as well. This raises the urgent need to recognise sickle cell disease as a public health priority in the country.
Dr. Tuphan Kanti Dolai, Professor and Head of Department – Hematology, NRS Medical College and Hospital, Kolkata commented, “Sickle Cell Disease is not well documented in West Bengal, although estimates suggest that highest prevalence is found in the regions of Midnapur, Jhargram, Purulia and Bankura, especially amongst the tribal population. There is currently low awareness and a lack of appropriate infrastructure to address the concern. “Holistic, largescale interventions are required to combat challenges of poor infrastructure and ensure enhanced management and innovations in treatment. This can be achieved through a combination of government funding, NGO support and government initiatives aimed at studying gaps in disease management, establishing guidelines and running a well-developed disease control program. Government support should also be extended to make advanced therapies in the field more accessible.”
Mr. Saumil Mody, General Manager, Novartis Oncology India and Member of the National SCD Council said, “Through innovative and digitally-enabled solutions, we hope to meet our dual objectives of empowering our patients through improved SCD screening and access to advanced therapies across the country.”
Mr. Gautam Dongre, Member Secretary of National Alliance of Sickle Cell Organisations (NASCO), is the father of 2 sickle cell patients. According to him, “Inclusion of patient’s and caregiver’s voice is essential to frame and implement any policy for the Sickle Cell Disease (SCD) community across India.”
SCD refers to a group of inherited red blood cell disorders. It is characterised by repeated episodes of debilitating pain, also known as vaso-occlusive crises (VOCs), and fever. VOC episodes among sickle cell patients are also associated with increased hospitalizations and morbidity. Organ damage, chronic kidney disease and functional disability are a few of its longer-term complications, with SCD patients also more susceptible to infections, stroke, acute chest syndrome, fatigue and leg ulcers. Delay in diagnosis and treatment of the disease can amplify these problems.
Owing to SCD being historically neglected, progress in terms of diagnosis, treatment and the adoption of innovation has been slow. To be recognised as a public health priority, SCD requires a national programme, a comprehensive care plan and establishment of standard India-specific treatment protocols, supported by capacity building at the grassroots level, so that states can deliver localised plans catering to their demographic’s specific needs.
By shaping policies, scaling the availability of better treatment facilities and advanced therapies, patients’ abilities to manage the disease and their quality of life can be significantly improved.