Answer:

The National Sickle Cell Anaemia Elimination Mission (2023) was announced in the Union Budget 2023-24 . It aims to eliminate Sickle Cell Disease (SCD) by 2047, with a focus on providing affordable healthcare and increasing awareness. Despite this initiative, India ranks third globally in terms of SCD births, with estimated 15,000 to 25,000 babies born annually, primarily in tribal regions. These geographic and socioeconomic barriers have kept SCD a persistent health issue, requiring further efforts in diagnosis and treatment to achieve comprehensive care.

Challenges in the Diagnosis of Sickle Cell Disease in India:

• Limited Access to Screening and Diagnostic Facilities: Many rural and tribal areas lack adequate healthcare infrastructure. Diagnostic tests such as haemoglobin electrophoresis or HPLC are often unavailable.
  For Example: In the tribal regions of Madhya Pradesh, only a few primary healthcare centres are equipped with diagnostic facilities, delaying early detection.
• Lack of Trained Healthcare Professionals: Many healthcare workers in rural areas are not trained to recognise the symptoms of sickle cell disease, leading to under-diagnosis or misdiagnosis.
  For Example: In Odisha, many health workers confuse the symptoms of SCD with other common conditions like malaria, delaying proper diagnosis and treatment.
• Cultural and Social Barriers: In some communities, there is a reluctance to seek medical help due to stigma or lack of trust in modern medicine, limiting the reach of screening programmes.
  For Example: In tribal areas of Maharashtra, families often rely on traditional healers instead of modern diagnostic methods, contributing to delayed diagnoses.
• High Cost of Diagnostic Tests: While basic blood tests are affordable, advanced diagnostic procedures for confirming sickle cell disease, such as genetic testing, can be expensive for low-income families.
  For Example: In Jharkhand, the cost of a haemoglobin electrophoresis test at private labs is beyond the reach of many tribal families, leaving many undiagnosed.
• Inconsistent Data Collection and Reporting: There is a lack of comprehensive data on sickle cell prevalence and diagnosis in many parts of India, making it difficult to allocate resources effectively and plan interventions.
  For Example: In Chhattisgarh, the absence of a centralised registry for SCD cases results in fragmented data, hindering the state’s ability to implement targeted screening programmes.

Challenges in the Treatment of Sickle Cell Disease in India:

• Limited Access to Regular Healthcare: Patients with SCD require consistent access to medical care, including pain management and blood transfusions. In remote and tribal areas, healthcare facilities are sparse, making regular treatment difficult.
  For Example: In the remote tribal districts of Madhya Pradesh, many patients have to travel over 50 kilometres to access blood transfusion facilities, leading to delayed or missed treatments.
• Shortage of Trained Healthcare Providers: Managing SCD requires specialised knowledge of the disease. Many healthcare providers in rural India lack the training necessary to provide appropriate care, particularly in managing complications.
  For Example: In Gujarat’s Dahod district, healthcare workers have reported difficulty managing SCD complications like acute chest syndrome, due to insufficient training in specialised care.
• High Cost of Treatment: Treatments such as hydroxyurea (a medication used to reduce pain episodes) and bone marrow transplants (a potential cure) can be prohibitively expensive for many patients limiting access to proper care.
• Poor Availability of Blood for Transfusions: Blood transfusions are a key treatment for SCD, but the availability of safe blood, especially in rural regions, is often unreliable leading  to delays in treatment, exacerbating symptoms.
• Lack of Awareness and Patient Education: Many patients and families are unaware of how to properly manage the disease, leading to poor adherence to treatment plans, worsening symptoms, and higher mortality.

Measures to Tackle Sickle Cell Disease in India:

• Expand Awareness Campaigns: Launching large-scale public awareness campaigns in tribal and rural areas can improve early diagnosis and reduce stigma.
  For instance: The government could collaborate with local NGOs to educate communities about SCD prevention and treatment.
• Enhance Screening Programs: Implementing universal newborn screening programs in high-prevalence areas can improve early detection and treatment.
• Subsidise Treatment and Medications: Offering subsidised medications like hydroxyurea and free treatment through public healthcare schemes can reduce the financial burden on families.
  For instance: Ayushman Bharat could be extended to cover SCD-specific treatments, providing affordable care to vulnerable communities.
• Improve Healthcare Infrastructure: Establishing more SCD treatment centres in rural and tribal areas can ensure better access to care and reduce the patient load in cities.
  For example: Jharkhand is building specialised SCD centres in remote districts to provide better medical support.
• Promote Genetic Counselling: Offering genetic counselling services can help families understand SCD’s genetic nature and plan preventive measures.
  For example: Pilot programs in Kerala have shown that genetic counselling reduces the transmission of SCD in at-risk families.
• Encourage Research and Development: Supporting the Council of Scientific and Industrial Research (CSIR) in developing gene-editing therapies can provide long-term solutions.
• Integrate Public-Private Partnerships: Collaborating with the private healthcare sector can improve access to advanced treatments and healthcare infrastructure.

To successfully eliminate sickle cell anaemia by 2047, India must focus on holistic approaches combining awareness, early screening, and affordable treatment. Strengthening healthcare infrastructure in tribal areas, expanding research in gene therapies, and addressing socioeconomic barriers are crucial to achieving the goals of the National Sickle Cell Anaemia Elimination Mission. 

DOWNLOAD PDF