As we recently commemorated World Sickle Cell Day 2020, it’s crucial to shed light on this health concern that affects a significant population in India. On June 19th each year, countries globally, including India, attempt to amplify awareness about Sickle Cell Disease (SCD) as recognized by the United Nations. The global body went a step further on December 22, 2008, recognizing SCD as a public health problem through a resolution by the United Nations General Assembly.
Understanding Sickle Cell Disease
Sickle Cell Disease is an inherited blood disease most prevalent among individuals of African, Arabian, and Indian origin. It is characterized by disorders affecting hemoglobin – the molecule in red blood cells responsible for delivering oxygen to various body cells. Those with SCD possess a peculiar type of hemoglobin molecule known as hemoglobin S, which can distort red blood cells into a sickle or crescent shape. This distortion inhibits blood flow and deprives several body parts of oxygen.
Symptoms of Sickle Cell Disease
SCD patients often suffer severe pain referred to as sickle cell crises. Other symptoms include infections and fatigue. Complications such as stroke, acute chest syndrome, blindness, and bone damage are common risks among sickle cell disorder patients. Over time, the disease can cause organ damage, notably affecting the liver, kidney, lungs, heart, and spleen, which could result in death.
Treatment for Sickle Cell Disease
Treatment approaches for SCD typically include medication, blood transfusions, and in rare cases, a bone-marrow transplant.
Prevalence of Sickle Cell Disease in India
According to the Global Burden of Disease (GBD)—a research programme estimating the mortality and burden of major diseases— the incidence of sickle cell disease in India was 195,166 and prevalence was 1,104,634 in 2018 and 2017 respectively. Prevalence is particularly high in eastern Gujarat, Maharashtra, Madhya Pradesh, Chhattisgarh, western Odisha and pockets of the Nilgiri Hills in north Tamil Nadu and Kerala. Tribal communities, including children, are frequently affected.
Challenges in Combating Sickle Cell Disease
Numerous challenges confront effective management of SCD such as social stigma which limits the efficiency of screening programmes. In addition, limited access to care in tribal regions exacerbates the issue. The disease often forces children to leave school due to health difficulties, presenting a notable educational challenge. Furthermore, policy-related issues like delayed implementation of the 2018 draft policy on haemoglobinopathies also affect the effectiveness of SCD control strategies.
Government Initiatives for Sickle Cell Disease
Several initiatives have been rolled out by the Indian government to combat SCD. The Ministry of Tribal Affairs initiated a project to collect real-time data and relevant information regarding SCD. They launched a portal to provide information about the disease, government initiatives, and registration facilities. The ministry also promotes a Yoga-dependent lifestyle under an ‘Action Research’ project to mitigate disease complications. Certain states like Chhattisgarh and Gujarat have expanded their screening programmes from hospitals to schools to improve diagnosis rates.
The Way Forward
SCD poses a significant health burden impacting individuals’ life cycles and the economy. It is imperative that efforts are made to rid future generations of this disease. Industrial organizations like FICCI and other stakeholders must also contribute to improving the government’s Sickle Cell program. By working together, we can hope for a future where Sickle Cell Disease is better managed, if not entirely eradicated.