Sickle Cell Disease in India: Challenges, Advances, and the Path to Elimination

Rachelle DiMedia
1 day ago
6 min read

Sickle cell disease (SCD) is an inherited group of blood disorders characterized by the abnormal hemoglobin (HbS), which distorts red blood cells into a rigid, sickle-shaped form. In a sickle cell crisis, these malformed cells block blood flow, resulting in severe pain and serious complications (1-3,5).

Symptoms are often progressive and life-threatening(1-3,5):

Chronic, debilitating pain due to blocked blood flow.
Anemia occurs after the rapid breakdown of sickle cells, causing fatigue and weakness.
Infections due to splenic damage.
Swelling due to blocked blood flow, especially in the hands and feet.
Organ damage and failure (heart, liver, kidneys).
Acute Chest Syndrome: A lethal condition characterized by chest pain, fever, and difficulty breathing

India ranks 3rd globally for the number of annual sickle cell disease (SCD) births, after Nigeria and the Democratic Republic of the Congo. However, the actual prevalence is still unknown because the majority of people in India with the condition remain undiagnosed. The prevalence of sickle cell trait (SCT) varies by ethnicity and geography, with the highest rates observed in tribal populations residing on the Deccan Plateau of central India and amongst groups known as Scheduled Castes. The clinical manifestations of SCD differ, with phenotypical presentations of the disease varying widely. Due to the substantial differences in socioeconomics, ethnicity, and patient location, addressing disparities such as financial constraints and access to healthcare is a significant challenge in India (1,2).

Although the classic sickling of blood cells is well described, the mechanisms underlying the genomic pathology of the disease, along with the resulting morbidity, remain unclear. The complications of the disease are known to be devastating, and premature death rates are high. Overall survival is approximately 2-3 decades shorter than that of the general population, with an average lifespan of 40 years. The disease states in central India tend to be more severe, particularly in childhood, with increased frequency of bone crises and transfusions reported. The number of deaths may be higher due to a lack of information on tribal and disadvantaged communities, where these numbers may be underreported (1-4).

Governmental Support:

In 2023, the government of India established the National Sickle Cell Anaemia Elimination Mission (NSCAEM) to eliminate Sickle Cell Disease (SCD) as a public health issue by 2040. This initiative aims to increase diagnoses and provide treatment through interdisciplinary care, supported by funding from governmental agencies throughout India, which fund care, pharmaceutical development, non-profit organizations, and academic and research institutions. Their mission includes awareness campaigns, universal screening and confirmatory testing for early detection and prevention, research and development, and providing private, accessible, and affordable healthcare for those afflicted. Additionally, SCD is recognized as a disability in India. Individuals suffering from the disease are provided with resources and benefits for people with disabilities.

Figure 2: India's roadmap for NSCAEM (2)

The government has coordinated federal, state, and local resources to aid in the recognition, prevention, treatment, and eradication of the disease (1,2):

Government-funded counselling, rehabilitative care, nutritional support, education, mobility support, vocational guidance, and genetic counselling.
Public awareness campaigns
Comprehensive care for sickle cell disease has been established at district hospitals, and several advanced sickle cell centers of excellence have been established for care, counseling, and research, offering advanced screening and treatments, including stem-cell transplantation.
Free access to the Pneumonia vaccine, penicillin prophylaxis, and hydroxyurea.
Federally funded clinical trials evaluating new medications, complementary and alternative medicine, and gene therapy.
Pharmaceutical industry partners are incentivised to utilise public facilities for developing novel therapies for sickle cell disease.
Interdisciplinary partnerships involving self-help groups, youth groups, tribal leaders, teachers, community leaders, and non-governmental organisations (NGOs) have been established to increase community awareness, address misconceptions, reduce stigma, and increase acceptance of interventions.
Training for government-employed healthcare workers, activists, multipurpose workers, and counselors to screen for early diagnosis, to provide premarital and preconception genetic counseling for individuals who test positive for SCT, and to provide holistic care.
The National Alliance of Sickle Cell Organizations, an umbrella organization representing 17 non-governmental organizations (NGOs) that work alongside patients with sickle cell disease in various parts of the country, plays a crucial role in community and patient engagement, awareness building, and advocacy at the local, regional, national, and international levels.
Under the Health for All initiative, the Ministry of Tribal Affairs developed a program called Going Online as Leaders, in which community members serve as ambassadors to raise awareness of sickle cell disease and available facilities by organizing peer support groups through social media platforms.
Comprehensive management for patients, including coordinated referral for managing systemic comorbidities, and integration of culturally appropriate practices such as yoga for complementary care.
A newborn screening initiative, one of the most effective ways to detect SCD early, encompasses all in- and out-of-hospital births. This includes follow-up care, invlolving regular assessments of blood, clinical presentations, and growth, to provide study populations for future research trials that could provide insight into disease cause, understanding of the varied clinical manifestations of the disease, as well as the efficacy of new and existing treatments and prevention of complications or even the disease itself (1).

The government's heroic efforts have led to the creation of sustainable solutions and the continued development of innovative research, with these solutions being implemented for the benefit of the Indian community.

Despite progress, challenges remain. So, what are the challenges and what else can still be done?

Challenges (2,3):

Delayed diagnosis: Tribal populations relying on traditional healers delay treatment and increase complications.
Economic Burden: Chronic illness leads to multiple hospitalizations and loss of income, straining families and reducing national productivity.
Healthcare access and treatment adherence:
- Only 18% of affected individuals receive consistent care.
- Medicine and vaccine supplies are inconsistent, resulting in poor coverage and an increased prevalence of infections and related complications that are more severe.
- Irregular availability of transportation to health facilities located far away.

Proposed Solutions (3,4):

The continuation and expansion of NSCAEM, accompanied by investment in research, infrastructure, education, and equitable healthcare delivery.
Indian-specific studies to explore regional and ethnic variations in disease severity, enabling the development of tailored care models.
A unified national strategy with international collaboration to implement best practices and infrastructure.
Mandatory premarital or preconception screening, including registries to monitor births, survival, comorbidities, and treatment efficacy, including counseling programs, accompanied by community-based awareness campaigns, to increase the number of volunteers.
Integration of newborn screening into public health programs, especially in endemic regions.
Expanded training for primary healthcare professionals to improve diagnosis, treatment, family counseling, and integrative care.
Nationwide public education campaigns to raise health literacy and promote early screening and care adherence.
Increased investment in novel drug development, implementation of cost-effective, point-of-care diagnostic tools, epidemiological surveillance to map disease burden, and research on local genetic variations, treatment outcomes, and interventions.
Make medicines and vaccines more reliably available.
Culturally tailored school-based programs to teach students about SCD, to destigmatize, and promote testing.
More studies focused on Indian populations due to the differentiation of disease based on geography and ethnicity. This will aid the development of appropriate, individualized models of care, since models based on other countries do not offer the proper therapeutic regimen and, thus, are inappropriate for Indian populations.

Conclusion: India’s battle against sickle cell disease exemplifies both determination and innovation. With strong governmental leadership, robust public-private partnerships, and culturally aware community-based strategies, the goal of eliminating SCD by 2040 is achievable. However, continued long-term investment and political support, along with increased sustainable funding from multiple sources and partnerships, are necessary to advance efforts in reducing the prevalence and burden of SCD, particularly among the most vulnerable populations.

References:

Serjeant GR, Ghosh K, Patel J. Sickle cell disease in India: A perspective. Indian J Med Res. 2016 Jan;143(1):21-4. doi: 10.4103/0971-5916.178582. PMID: 26997009; PMCID: PMC4822363.
Jain D, Gupta M, Madkaikar M, Jena RK, Khargekar N, Saraf SL, Krishnamurti L, Gupta K. Sickle cell disease in India: current status and progress. Lancet Haematol. 2024 May;11(5):e322-e323. doi: 10.1016/S2352-3026(24)00109-1. PMID: 38701819.
Insights Editor. (2025, January 25). UPSC: Editorial analysis: Sickle cell disease in India: A public health challenge. Insights on India. https://www.insightsonindia.com/2025/01/25/upsc-editorial-analysis-sickle-cell-disease-in-india-a-public-health-challenge/.
Kishore, R. R.1; Gupta, Mihir2; Gupta, Kalpna3,*. A new era dawns on sickle cell disease in India. Indian Journal of Medical Research 157(6):p 491-493, June 2023. | DOI: 10.4103/ijmr.ijmr_1045_23.
Centers for Disease Control and Prevention. (2025, February 21). About sickle cell disease. https://www.cdc.gov/sickle-cell/about/index.html

Author: Rachelle DiMedia

Assessed and Endorsed by the MedReport Medical Review Board