Eradicating Sickle Cell Disease; Securing the Future of India’s Tribal Communities

Why in News?

• Recently, the Prime Minister launched National Sickle Cell Anaemia Eradication Mission (NSCAEM), which aims to eliminate the disease by 2047.
• The disease poses a significant threat to the future and existence of India’s indigenous populations, and it is imperative to prevent the spread of this disease in a timely manner.

 

 

Sickle Cell Disease (SCD)

• First discovered by a physician named James Herrick, Sickle cell anaemia is one of a group of inherited disorders commonly found among tribal communities.
• It is a genetic disorder in which a person’s red blood cells become distorted and take on a sickle-like shape.
• Sickle cell disease exists in two forms within the human body.
  • One is the Sickle Cell trait, in which the individual does not exhibit any disease or symptoms, and lives a normal life.
  • The second form is characterised by the presence of symptoms related to SCD.

 

How does SCD affect a person?

• A round red blood cell can move easily through blood vessels because of its shape but sickle red blood cells end up slowing and even blocking the blood flow.
• These obstructions and shortages may cause chronic anaemia, pain, fatigue, acute chest syndrome, stroke, and a host of other serious health complications.

 

Prevalence of SCD in India

• India is the second-worst affected country in terms of predicted births with SCA — i.e., chances of being born with the condition.
• In India, around 18 million people have sickle cell traits and 1.4 million patients have SCD.
• It is widespread among the tribal population in India where about 1 in 86 births among STs have SCD.
• A few states in India have a significantly higher SCD prevalence. These include:
  • Chhattisgarh, West Bengal, UP, Maharashtra, MP, Jharkhand, Gujarat, Odisha, Kerala, and Rajasthan.
  • Collectively, these states are referred to as the sickle cell belt.

 

Treatment Methods

• Prevention
  • The first approach focuses on prevention, ensuring that new cases are not born.
  • If two individuals with Sickle Cell trait marry each other, there is a high probability that their child will have SCD.
  • By screening individuals for Sickle Cell trait before marriage, the spread of the disease can be prevented.
• By Providing Healthcare Facilities
  • The second approach involves managing the treatment and providing adequate healthcare facilities for individuals already affected by the disease.
  • A comprehensive ecosystem is being developed to address these aspects and ensure access to proper healthcare and management for SCA patients.

 

Steps Taken by India to Tackle SCD

• The Ministry of Tribal Affairs (MoTA) has launched the Sickle Cell Disease Support Corner to bridge the gap between patients and health care services in tribal areas.
• The Portal provides a web-based patient powered registration system which will collate all information related to SCD among tribal people in India.
• The National Council on Sickle Cell Disease has also been constituted for timely and effective action.

 

National Sickle Cell Anaemia Eradication Mission (NSCAEM)

• Announced in the Union Budget 2023, the mission aims to address the pressing health challenges posed by SCD, particularly among the tribal population.
• Through this mission, the government aims to eradicate sickle cell anaemia from India in a mission mode by 2047.
• A web portal has been created using digital technology to track and maintain a complete record of sickle cell patients.

 

Objectives/Features of NSCAEM

• Extensive Screening
  • The Ministry of Health, in collaboration with the MoTA and the states, has formulated a plan to screen approximately 70 million individuals aged 0-40 years belonging to tribal and other groups residing in nearly 200 districts of 17 states within the next few years.
  • After screening, individuals will be provided with smart cards in their local language, enabling prospective partners to easily determine whether their future children will be affected by SCD or not.
• To Establish Monitoring Mechanisms
  • Monitoring mechanisms will be established at various levels to ensure participation and bring awareness on a large scale.
  • Individuals identified with the disease through screening will undergo regular testing, receive treatment and medication, vaccinations for other diseases, get dietary support, and have access to timely counselling services.
• Extending Ayushman Bharat Scheme
  • Through the Ayushman Bharat scheme, the country has established a network of 1.6 lakh Health and Wellness Centres since 2018, which has played a crucial role in combating epidemics like Covid19.
  • These centres will also play a significant role in eradicating SCD along with other diseases.
  • These centres have trained healthcare workers who will provide better treatment for sickle cell patients. 
• Also, the government has allocated a sufficient budget, utilised advanced technology, provided training to healthcare workers, ensured necessary infrastructure, and made efforts in social awareness and participation to combat this disease. 

 

Conclusion

• India’s tribal population, which constitutes 8.6 per cent of India’s total population and approximately 706 different tribal communities, is an integral part of the country's rich cultural heritage.
• This mission will pave the way for the elimination of SCA by the year 2047, ensuring the preservation of India’s tribal population, which has kept the country’s heritage alive.

 

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Q1) What kinds of medical advances/research have helped patients suffering from SCD?

Currently, there is a lot of advanced research across the world and India to understand this disease better and to develop additional treatments.  The success of hydroxyurea therapy has greatly improved the quality of life for many people with sickle cell disease. Hydroxyurea therapy is the first medication taken by mouth that actually reduces the number of sickle cells in the body. This reduces the number of complications the patient experiences.

Q2) What are the challenges in tackling SCD?

SCD as a condition is often misdiagnosed as any other blood disorder. This delays treatment. Moreover, in urban settings, there is a lack of awareness about this condition. In remote areas, the lack of proper medical infrastructure and knowledge of the healthcare workforce make timely detection, screening and treatment a challenge.

 

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Source: The Indian Express