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sickle cell anaemia – prevalence of the disease in India, efforts to eliminate the disease and key challenges associated with it

Context

  • The Union Finance Minister while presenting the Union Budget 2023-24 has announced that the government will work in “mission mode” to eliminate sickle cell anaemia by 2047.

Sickle Cell Anaemia

  • Sickle Cell Anaemia is an inherited blood disorder or red blood cell (RBCc) disorder.
  • Red blood cells contain hemoglobin which is a protein that carries oxygen through the body.
  • Usually, the RBCs are disc-shaped and flexible in order to move easily through the vessels. In the case of sickle cell anaemia RBCs are crescent or sickle-shaped thereby slowing or at times blocking the blood flow.
  • Haemoglobin normally has four protein subunits which consist of two alpha and two beta.
  • However, in some cases mutations in the gene that creates the beta subunits impact the shape of the blood cell and distort it to look like a sickle.
  • The blocked blood flow through the body could cause serious issues such as anemia, pain, fatigue, acute chest syndrome, stroke, eye problems and infections among others.
  • Furthermore, such sickle cells usually die early which causes a shortage of RBCs and hence deprives the body of oxygen.
  • Sickle cell disease is said to be a lifelong illness and a blood and bone marrow transplant is said to be the only efficient cure for the disease.
  • Gene therapies and stem cell transplants are also seen as possible cures for the disease.

Prevalence of the disease in India

  • India is said to be the second-worst affected country in terms of predicted births with Sickle cell anaemia.
  • Sickle cell anaemia is highly prevalent in tribal children in India.
  • About 1 in 86 births among Scheduled Tribe populations in India have sickle cell anaemia.
  • Researchers believe that the prevalence of the disease is higher in communities residing in areas where malaria is endemic.
  • In India, regions or areas with tribal populations account for a significant malaria case load.
  • The reports also suggest that the prevalence of sickle cell anaemia is seen to be higher in communities that practice endogamy, as the chances of having two parents with sickle cell trait are higher.
  • The prevalence of the disease is higher in central, western and southern parts of India.
  • Gujarat has the second highest number of sickle cell anaemia cases in India followed by Maharashtra.

Key challenges for the government to meet the target of 2047

 

  • Since sickle cell disease being a genetic disorder, it is very difficult to bring about  complete elimination of the disease.
  • Further, the methods for treating the disease are either costly or still in developmental stages.
  • Additionally, there is a severe shortage of donors, fears about the safe supply of blood and risk of infection associated with blood transfusion which involves the transfer of RBCs from donated blood and to a patient.

Initiatives undertaken in India

  • The Indian Council of Medical Research (ICMR) is undertaking various outreach programmes for better management and control of sickle cell disease.
  • Under the National Rural Health Mission (NRHM), States are also undertaking awareness drives and outreach programmes.
  • The Ministry of Tribal Affairs (MoTA) has launched a portal that helps collect important data with respect to the prevalence of sickle cell anaemia among tribal communities.
  • The Union Health Minister in the Union Budget speech announced that the government plans to distribute “special cards” across tribal areas to people below the age of 40.
  • These cards will be categorized into different categories based on the screening results and the programme will receive funding under the National Health Mission (NHM).
  • The government is also required to conduct marriage counselling in areas with high incidences of the disease.