In 2023, Prime Minister Narendra Modi launched the National Sickle Cell Anaemia Elimination Mission, with the goal of eradicating sickle cell disease as a public health issue by 2047. India bears the second-largest global burden of the disease, affecting over a million people. The majority of cases are concentrated in the tribal regions of Odisha, Jharkhand, Chhattisgarh, Madhya Pradesh, and Maharashtra.
Sickle cell disease
- Genetic Basis of the Disease: Sickle cell disease occurs due to a genetic abnormality that affects the shape and function of red blood cells. When genes responsible for producing hemoglobin are impaired, they cause red blood cells to take on a sickle shape.
- Inheritance and Risk Factors: If both parents carry the sickle cell trait, their child has a higher likelihood of inheriting the disease. The genetic transmission follows an autosomal recessive pattern, making it more probable when both parents are carriers.
- Effects of the Disease: The disease dramatically shortens the lifespan of affected individuals, reducing it to about 40 years. Patients also experience a diminished quality of life due to a range of health complications, including anaemia, recurrent infections, severe pain, swelling, and damage to vital organs.
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Challenges in Eliminating Sickle Cell Disease
- Social Challenges: Patients often face severe social stigma, with some communities viewing the disease as a “curse from God” or attributing it to “black magic.” Due to its hereditary nature, patients encounter reduced marital and social opportunities, driven by fears that their children might inherit the condition. Individuals with sickle cell disease may be deemed “genetically inferior,” leading to social ostracism and isolation.
- Limited Treatment Reach: Estimates suggest only about 18% of those affected by sickle cell disease in India receive regular and effective treatment.
- High Drop-Out Rates: Patients often discontinue treatment at various stages—during screening, diagnosis, initiation of treatment, or adherence—primarily due to social stigma and other barriers.
- Preference for Traditional Healers: Historical mistrust of the public healthcare system in tribal regions results in fewer individuals seeking necessary diagnostic tests. Many individuals seek remedies from traditional healers like “vaids” and “hakims”, leading to misdiagnosis and delays in appropriate treatment.
- Treatment Challenges: Adherence to treatment is a significant issue for sickle cell disease patients as currently, there is no permanent cure. Although gene therapy research shows promising results. Gene therapy involves altering genes within a patient’s cells to correct the genetic mutations causing the disease. Despite its potential, gene therapy is expected to be prohibitively expensive for most affected individuals when it becomes available.
- Irregular Medication Supply: Currently, drugs like hydroxyurea are effective for many patients if administered correctly and consistently. However, patients face challenges such as irregular and inconvenient medication supplies, unlike more stable treatments for diseases like tuberculosis. Key medications frequently go out of stock, and patients often have to travel long distances—sometimes over 200 kilometres in central India—to access them. Patients with sickle cell disease require frequent vaccinations to protect against infections that can exacerbate their condition. Despite their importance for reducing infection rates and improving quality of life, vaccination coverage remains inadequate.
Screening vs. Diagnosis
- Screening: This involves large-scale testing to identify individuals who may be at risk for a condition. It is designed to detect potential cases early but does not provide a detailed understanding of the disease.
- Diagnosis: This step follows screening and involves gathering in-depth information to confirm the presence of the disease and understand its specifics. It provides a comprehensive assessment of the condition, including its severity and implications.
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Government Efforts
- National Screening Program: Following the launch of the National Sickle Cell Anaemia Elimination Mission in 2023, the Central government has initiated a comprehensive nationwide screening program to identify cases early and ensure timely treatment.
- Inclusion of Hydroxyurea: Hydroxyurea, a crucial medication for treating sickle cell disease, has been added to the essential medicines list. This inclusion aims to improve access by focusing on its procurement and distribution, particularly in government hospitals.
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The Way Ahead
- Reducing Stigma: Launch campaigns to debunk myths and reduce stigma surrounding sickle cell disease. This will encourage more individuals to seek treatment. India can leverage its past successes with polio and HIV awareness campaigns and a similar strategy can be made to address social barriers and promote broader acceptance and treatment for sickle cell disease.
- Ensure Cultural Sensitivity: Develop and execute targeted campaigns that are tailored to the unique tribal and local cultural contexts, fostering greater understanding and acceptance of sickle cell disease within these communities.
- Enhanced Newborn Screening: To catch more cases early and reduce missed or late diagnoses, increase the scope of newborn screening programs. This approach is cost-effective and especially beneficial in areas where the disease is prevalent.
- Improved Local Health Support: Ensure that essential drugs and adherence support are available at local health and wellness centres. Establish interdisciplinary centres of excellence at district or division levels to handle complex cases.
- Vaccination: Administer approved vaccines to all patients with sickle cell disease. Also, ensure that catch-up vaccination programs are in place for those who missed initial doses.
- Tribal Healthcare Infrastructure: Allocate funding to improve healthcare infrastructure in tribal areas to better support patients and healthcare providers.
- 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.
September 13, 2024
