From Burden to Breakthrough: India's Bold Mission to Eradicate Sickle Cell Disease by 2047!

What is Sickle-Cell Disease (SCD) Disease?

Genetic Basis: Sickle Cell Disease (SCD) is an inherited hemoglobin disorder characterized by a genetic mutation that causes red blood cells (RBCs) to assume a sickle or crescent shape rather than their normal round shape.

Effects:?The lifespan of patients with sickle cell disease is significantly reduced, averaging around 40 years.

Inheritance and Risk Factors: SCD is a genetic condition that is present at birth. It is inherited when a child receives two genes—one from each parent—that code for abnormal hemoglobin. The genetic transmission follows an autosomal recessive pattern, making it more probable when both parents are carriers.

Impact:?This condition leads to shortened red blood cell survival, and subsequent anemia.

Symptoms of Sickle Cell Disease

• Chronic Anemia: Leads to?fatigue, weakness, and paleness.
• Pain Crises: Intense pain episodes in bones, chest, back, arms, and legs.
• Delayed Growth: Growth and puberty delays in children.

Treatment Processes

Blood Transfusions: Help manage anemia and reduce pain crises.

Hydroxyurea: Reduces the frequency of painful episodes and long-term complications.

Gene Therapy: Techniques like CRISPR and bone marrow transplants offer potential cures.

India bears the second-largest global burden?of sickle cell disease, with over a million people affected, primarily in the tribal regions across Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra.

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About National Sickle Cell Anemia Eradication Mission (NSCAEM):

Launch: Announced in Union Budget?2023?to address SCD, focusing on tribal populations. The mission focuses on awareness and screening programs for people?ages 0 to 40.

Goal: Eradicate sickle cell anemia by?2047?through a mission mode.

Digital Tracking: A web portal will maintain comprehensive records of sickle cell patients.

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Objectives/Features

Extensive Screening:?Plan to screen?70 million?individuals?aged 0-40?in?200 districts across 17 states.

Smart Cards:?Issued post-screening to indicate SCD risk in future children.

Monitoring Mechanisms:?Regular testing, treatment, vaccinations, dietary support, and counselling for identified individuals.

Ayushman Bharat Integration: Utilises?6 lakh Health and Wellness Centres?for SCD management, including trained healthcare workers and advanced technology.

The mission aims to?reduce the burden of sickle cell disease,?implemented in 17 high-focus states?across which primarily affects?India’s tribal belt (Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, Maharashtra).

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Challenges Faced by the Indian Government:

High Disease Burden:?India has the?world’s second-largest burden of sickle cell disease,?with over a million affected individuals, primarily in tribal areas.

Low Treatment Coverage:?Only 18% of people affected receive consistent treatment, with significant drop-offs in screening, diagnosis, and treatment adherence.

Stigma and Misinformation:?Social stigma around the disease,?myths such as “God’s curse” or “black magic,” and mistrust of public health systems, particularly in tribal areas, result in delayed diagnosis and treatment.

Treatment Adherence Issues:?Challenges include inconsistent availability of medicines like?hydroxyurea, long travel distances for treatment,?and?stock shortages at health centers.

Poor Vaccination Coverage:?Vaccination, which reduces infection rates and improves quality of life, remains inadequate in many affected regions.

Research and Development:?The lack of ongoing research into treatments and understanding of the disease in India, and the?unaffordability of emerging therapies like gene therapy, hinder long-term progress.

Financial and Operational Gaps:?Health systems in?tribal areas require additional funding and operational?strengthening to address region-specific health challenges effectively.

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Way Ahead

Early Identification:?Implement?newborn screening programs to identify sickle cell?disease?at birth.

Integration into Health Systems:?Sickle cell management should be integrated into national health services. This includes establishing?specialized centers for comprehensive care and ensuring that primary healthcare?providers are trained in managing sickle cell disease.

Public Education and Awareness:?Conduct public education campaigns to?raise awareness about sickle cell disease, reduce stigma, and inform communities about genetic risks?and prevention strategies.

Genetic Counselling:?Provide genetic counselling to families, especially in?communities with high prevalence, to inform them about the risks of having children with sickle cell disease?and the importance of carrier screening.

Improve Accessibility:?Ensure medicines and adherence support are available locally and establish interdisciplinary centers of excellence for complications.

Vaccination:?Implement catch-up vaccination programs for patients to reduce infections.

Strengthen Tribal Healthcare:?Tailor healthcare delivery to tribal areas and ensure sufficient funding for these regions.

Promoting Research and Collaboration:?Invest in research to better understand sickle cell disease and explore new treatments. Encourage?philanthropy and civil society?involvement to work alongside Central and State governments in advancing research and healthcare solutions.

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Conclusion:

To effectively tackle sickle cell disease, a holistic approach is needed, encompassing efforts to reduce social stigma, enhance treatment accessibility, and strengthen diagnostic and care infrastructure.

With continued government commitment and focused interventions, India can achieve eradication of sickle cell disease by 2047, replicating the success seen in the fight against polio.

With over a million people affected,?India’s sickle cell burden is immense, but the launch of the National Mission has created an opportunity for significant progress.

Link for the source: National Sickle Cell Anemia Elimination Mission (nhm.gov.in)

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