In the Union Budget 2023-24 announced by Finance Ministry on February 1, the launch of a mission to eliminate sickle cell anemia by 2047 was among the key announcements made on health. The program is expected to entail awareness creation and universal screening of seven crore people in the age group of 0-40 years in affected tribal areas, and counseling through collaborative efforts of central ministries and state governments.

What is Sickle Cell Anemia?

Sickle-cell anemia (SCA) is an often neglected chronic disorder of increasing global health importance. It is a single-gene disorder characterized by chronic anemia, acute painful episodes, chronic organ damage, and a significant reduction in life expectancy. It is one of a group of inherited disorders known as sickle cell disease and its most common form. SCD refers to a group of inherited disorders affecting hemoglobin. It affects the shape of red blood cells, which carry oxygen to all parts of the body. Red blood cells are usually round and flexible, so they move easily through blood vessels. In sickle cell anemia, some red blood cells are shaped like sickles or crescent moons. These sickle cells become rigid and sticky, which can slow or block blood flow.

SCA is transmitted by parents carrying a defective gene. A blood test can determine whether you have SCD or sickle cell trait. The disease starts early in life. Signs and symptoms of sickle cell anemia usually appear around 6 months of age. They vary from person to person and may change over time.  Individuals with SCA experience considerable morbidity. Those affected have persistent pain, low amount of hemoglobin, low energy, reduced growth along with other abnormalities, and multiple episodes of frequent severe pain.

There are periodic episodes of pain called pain crises. In this, pain develops in the chest, abdomen, and joints and varies in intensity, which could last for a few hours to a few days. People with SCA can also experience swelling of the hands and feet since sickle cells damage the spleen, increasing vulnerability to infections, and vision problems. Due to a shortage of RBCs, babies, and children could experience slow or delayed growth and puberty.

There is no cure for most people with sickle cell anemia. The available treatment options for the inherited blood disorder include medication, blood transfusion, and bone marrow transplant. Even though stem cell or bone marrow transplants can cure the disease, these come with several risks.

Treatments can relieve pain and help prevent complications associated with the disease. Without effective treatment, the most severe cases can be fatal within the first few years of life. In the absence of proper treatment, which is rarely available in low-income high-burden countries, it is assumed that most children born with the disease die in their first years of life.

Prevalence of Sickle Cell Anemia

Sickle Cell Disease is the most common severe monogenic disorder in the world, with a high prevalence in sub-Saharan Africa, parts of the Mediterranean, India, and in the Middle East. In South Asia, the highest prevalence of the disease is in India, where over 20 million patients with SCD live. Across the world, India is estimated to have the second-highest burden of the disease.

In India, SCA is predominantly found amongst scheduled tribe (ST) and scheduled caste (SC) populations. These constitute the most socioeconomically disadvantaged population subgroups in the country and, according to the latest census conducted in 2011 (www.censusindia.gov.in), account for about a quarter of the Indian population. This has important implications for health policy and planning. According to the Ministry of Tribal Affairs, sickle-cell anemia is widespread  among the tribal population in India where about 1 in 86 births among the scheduled tribes population have SCD.

There are approximately 200 districts in the country where the disease is prevalent, mostly in Maharashtra. Madhya Pradesh, Chattisgarh, Gujarat, Rajasthan, Jharkhand, and Odisha. Around 0.4 percent of the population suffer from SCA, while 10 percent are carriers that lead to the birth of new patients.

Due to improved survival and population movements, the global burden of SCA is increasing, with the annual number of SCA newborns expected to increase from ~300,000 to more than 400,000 between 2010 and 2050.

SCD prevalence in India has been quantified through various approaches, including village-level prevalence surveys as well as state-wide screening programs. Pilot projects of newborn screening programs for SCD in the states of Gujarat, Maharashtra, and Chhattisgarh resulted in figures of SCA prevalence ranging from two to 40 percent. The highest frequency of the SCA is found across Central India (up to 10 percent), from South-Eastern Gujarat to South-Western Odisha. Altogether, India has been ranked the country with the second highest number of predicted SCD births, with 42,016 newborns estimated to have been born with sickle cell anemia in 2010.

Ongoing Efforts to tackle SCA

Under National Health Mission, the Government of India supports the states for prevention and management of sickle cell disease as per their annual proposals. The Ministry of Health and Family Welfare also released technical operational guidelines for the prevention and control of hemoglobinopathies in 2016 including sickle cell anemia.  Further in terms of treatment, support is given under NHM for capsule hydroxyurea and free blood transfusion for all Sickle cell patients.

Under the Anemia Mukt Bharat Program, screening for hemoglobin disorders like Sickle cell anemia is a strategy to tackle the burden of anemia in the country. All states now check babies as part of their screening programs, allowing treatment to begin as soon as possible. According to the past two National Family Health Surveys, the status of anemia has also worsened. In 2016, the government released Guidelines for Prevention and Control of Hemoglobinopathies in India.

In 2020, the Ministry of Tribal Affairs 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 that will collate all information related to SCD among tribal people in India, including proving them a platform to register themselves if they have the disease or the trait.

State Haemoglobinopathy Mission has been established in states like Madhya Pradesh to tackle the challenges in screening and management of sickle cell disease. A pilot project was launched for screening in Jhabua and Alirajpur districts of Madhya Pradesh and 89 tribal blocks were included in the second phase of the project. As reported by the state, a total of 9.9 lakh persons have been screened, out of whom nearly 19 thousand have been detected to carry the Sickle Trait and over 1500 have SCD. Further, the MP state government has established Integrated Centre for Hemophilia and Hemoglobinopathies in 22 Tribal District for the treatment and diagnosis of patients.

Additionally, the Right of People with Disability Act 2016 recognized a person with sickle cell disease as a person with a disability thus making them eligible to receive the Disability Certificate and the benefits it offers.

Is it possible to eliminate SCA?

Even as the SCA elimination mission of the government is a welcome move,  experts call it an ambitious project, saying it is only partially possible to eliminate the disease through public awareness. Most cases of SCA are caused by a consanguineous marriage which can be avoided through public awareness.

There is a need to screen all populations for sickle cell trait, especially high-risk communities. To curb the prevalence of SCA, individuals will sickle cell trait should not marry each other since there is a 25 percent chance of having a baby with sickle cell disease. If they get pregnant, there is a need to screen fetuses for sickle cell disease.

Reaching tribal people in faraway remote interior areas of various states is challenging. Moreover, delivering effective communications that induce behavior change among tribal populations is also an uphill task.


Sickle cell anemia has been recognized as a global public health problem by the United Nations and the World Health Organization. The burden of this disorder and other hemoglobin disorders is expected to increase in the coming decades, because of reductions in infant mortality in many low-income countries.

Early, simple, cost-effective measures can change the prognosis of SCD in childhood. But these are challenging in low-income, high-burden settings. Neonatal screening for early diagnosis and immunization to control the infectious risk along with parents and medical community education can decrease SCD-related childhood mortality. Such measures are, however, not widely implemented, particularly in low-income countries, where 50-80 percent of children with SCD die before reaching five years of age. In places without newborn screening programs, the initial diagnosis of SCD typically occurs at approximately 21 months of age.

A detailed assessment of our current epidemiological knowledge and of the magnitude of the problem is needed to define adequate policies for diagnostics, education, and treatment to prevent or manage complications associated with sickle cell anemia.











Photo Credits: Family Doctor

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