Experts have pointed out the urgent need for a comprehensive care model for sickle cell disease (SCD). SCD, an inherited blood disorder, continues to remain a public health challenge in India. India is estimated to have the second-highest burden of SCD after Nigeria. 

The disease is reportedly said to have a higher prevalence in Chhattisgarh, Bihar, Uttar Pradesh, Maharashtra, Madhya Pradesh, Jharkhand, and Rajasthan which is referred to as the sickle cell belt. 

In addition to social stigma, minimal or no understanding of the disease, and lack of access to healthcare facilities for people in rural regions also impede diagnosis and timely treatment. 

“Initiatives such as intensive prenatal and newborn screening must be made mandatory along with providing Pneumococcal vaccination to adult SCD patients under doctor’s guidance. Managing complications like avascular necrosis (AVN), acute chest syndrome, and stroke becomes critical at a later phase hence proactive steps must be taken to create awareness regarding SCD, its screening, and treatment options,” said Gautam Dongre, Secretary, National Alliance of Sickle Cell Organizations, NASCO. 

He further elaborated, “We need to ensure last-mile connectivity and delivery of healthcare models in the remotest parts of the country and actively establish centres of excellence to meet advanced care requirements. While the Ministry of Health and Ministry of Tribal Affairs has taken active measures at a central and state level, emphasis needs to be put on skilling of healthcare professionals and other medical personnel so that they can identify SCD and accordingly recommend treatment.”