‘Sickle cell disease needs to be notified’

Sickle cell disease, a blood disorder, remains a public health challenge in India, which is estimated to have the second largest burden after Nigeria. “There is an urgent need to report sickle cell disease,” says Gautam Dongri, Secretary of the National Alliance of Sickle Cell Organizations (NASCO).

Sickle cell disease is often misdiagnosed as any other blood disorder. This delays treatment. Moreover, in urban areas, there is a lack of awareness about this condition. In remote areas, the lack of appropriate medical infrastructure and knowledge of the healthcare workforce makes timely detection, testing and treatment a challenge.”

The most common medication is Hydroxyurea, which effectively manages and reduces pain. In some cases, patients also need a blood transfusion and hospitalization. Stem cell transplants are the closest to a cure for this condition. However, this comes with its own set of challenges. Therefore, Dongre emphasizes, there is a need to better understand the disease and to identify and develop innovative solutions that will help overcome some of the challenges with existing options.

Donger, a Nagpur resident who was a carrier of sickle cell disease (SCD) and father of two children with the condition, says timely detection and treatment are critical to managing the disease. He has worked to raise awareness of the disease through webinars and Youtube videos providing testimonials for patients with sickle cell disease.

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With about 18 million people with sickle cell trait and 1.4 million patients with sickle cell disease, India is expected to have the second highest number in the world. Maharashtra is one of the 14 states in India with a large concentration of tribal groups, which are considered as weak as Scheduled Castes and OBCs. Sickle cell disease is highly prevalent in eastern districts of Maharashtra, which includes Vidarpa district, Satpura ranges and a few districts in Marathwada district.

A few states in India have a much higher prevalence of sickle cell disease: Chhattisgarh, West Bengal, Uttar Pradesh, Maharashtra, Madhya Pradesh, Jharkhand, Gujarat, Odisha, Kerala, and Rajasthan. Collectively, these are referred to as the sickle cell belt. Although the disease is more common among tribal communities, the disease is gradually finding its way across the country due to immigration and mixed marriages, according to Dongri.

Sickle cell disease requires a comprehensive model of care that includes timely and accurate treatment along with extensive prenuptial, prenatal and neonatal screening programs as well as administering pneumococcal vaccination to adult patients.

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