Haemoglobinopathies in India: estimates of blood requirements and treatment costs for the decade 2017–2026

Abstract

The Government of India is presently engaged in the implementation of a prevention and control programme for two major forms of haemoglobinopathies, thalassaemia major and sickle cell disease, with guidelines for their prevention and management formulated under the National Health Mission. Based on projections for the population up to the year 2026, the annual blood requirement for treatment will increase to 9.24 million units, together with an 86% increase in budgetary requirements which then would account for over 19% of the current National Health Budget. To avert a public health crisis there is an urgent need to fully implement the prevention programme for haemoglobinopathies.

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References

  1. Alswaidi FM, Memish ZA, O’Brian SJ, Al-Hamdan NA, Al-Enzy FM, Alhayani OA, Al-Wadey AM (2012) At-risk marriages after compulsory premarital testing and counseling for β-thalassemia and sickle cell disease in Saudi Arabia. J Gen Counsel 21:243–255

    Article  Google Scholar 

  2. Amato A, Cappabianca MP, Lerone M, Colosimo A, Grisanti P, Ponzini D, Di Biagio P, Perri M, Gianni D, Rinaldi S, Piscitelli R (2014) Carrier screening for inherited haemoglobin disorders among secondary school students and young adults in Latium, Italy. J Commun Genet 5:265–268

    Google Scholar 

  3. Basu A, Sarkar-Roy N, Majumder PP (2016) Genomic reconstruction of the history of extant populations of India reveals five distinct ancestral components and a complex structure. Proc Natl Acad Sci U S A 113:1594–1599

    CAS  Article  Google Scholar 

  4. Bittles AH (2002) Endogamy, consanguinity and community genetics. J Genet 81:44–50

    Article  Google Scholar 

  5. Bittles AH (2012) Consanguinity in context. Cambridge University Press, Cambridge

    Google Scholar 

  6. Black ML, Sinha S, Agarwal S, Colah R, Das R, Bellgard M, Bittles AH (2010) A descriptive profile of β-thalassaemia mutations in India, Pakistan and Sri Lanka. J Commun Genet 1:149–157

    CAS  Article  Google Scholar 

  7. Bozkurt G (2007) Results from the north Cyprus thalassemia prevention program. Hemoglobin 31:257–264

    CAS  Article  Google Scholar 

  8. Census of India (2011) Figures at a glance. http://censusindia.gov.in/2011-prov-results/indiaatglance.html

  9. Chandy M (2008) Developing a national programme for India. In: Ghosh K, Colah R (eds) Control and Management of Thalassemia and other Hemoglobinopathies in the Indian Subcontinent_ Synoptic Views. National Institute of Immunohaematology, Mumbai

    Google Scholar 

  10. Colah RB, Gorakshakar A (2014) Control of thalassemia in India. Thal Reports 4(s1):1955. https://doi.org/10.4081/thal.2014.s1.1955

    Article  Google Scholar 

  11. Colah R, Mukherjee M, Ghosh K (2014) Sickle cell disease in India. Curr Opin Hematol 21:215–223

    Article  Google Scholar 

  12. Colah RB, Mehta P, Mukherjee MB (2018) Newborn screening for sickle cell disease: Indian experience. Int J Neonatal Screen 4:31. https://doi.org/10.3390/ijns4040031

    Article  Google Scholar 

  13. Cousens NE, Gaff CL, Metcalfe SA, Delatycki MB (2010) Carrier screening for Beta-thalassaemia: a review of international practice. Eur J Hum Genet 18:1077–1083

    Article  Google Scholar 

  14. Educational Statistics at a Glance (2016) Department of School Education and Literacy, Ministry of Human Resource Development. Government of India, New Delhi

    Google Scholar 

  15. Giordano PC (2009) Prospective and retrospective primary prevention of hemoglobinopathies in multiethnic societies. Clin Biochem 42:1757–1766. https://doi.org/10.1016/j.clinbiochem.2009.06.027

    Article  PubMed  Google Scholar 

  16. Hockham C, Bhatt S, Colah R, Mukherjee MB, Penman BS, Gupta S, Piel F (2018) The spatial epidemiology of sickle-cell anaemia in India. Sci Rep 8:17685. https://doi.org/10.1038/s41598-018-36077-w

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  17. India State-Level Disease Burden Initiative Collaborators (2017) Nations within a nation: variations in epidemiological transition across the states of India, 1990–2026 in the Global Burden of Disease Study. Lancet 390:2437–2460

    Article  Google Scholar 

  18. Lau EHY, He X-Q, Lee C-K, Wu JT (2013) Predicting future blood demand from thalassemia major patients in Hong Kong. PLoS One 8(12):e81846. https://doi.org/10.1371/journal.pone.0081846

    CAS  Article  PubMed  PubMed Central  Google Scholar 

  19. Loukopoulos D (2011) Haemoglobinopathies in Greece: prevention programme over the past 35 years. Ind J Med Res 134:572–576

    Google Scholar 

  20. Miri M, Tabrizi Namini M, Hadipour Dehshal M, Sadeghian Varnosfaderani F, Ahmadvand A, Yousefi Darestani S, Manshadi M (2013) Thalassemia in Iran in last twenty years: the carrier rates and the births trend. Iran J Blood Cancer 6:11–18

    Google Scholar 

  21. Mitchell JJ, Capua A, Clow C, Scriver CR (1996) Twenty-year outcome analysis of genetic screening programs for Tay-Sachs and β-thalassemia disease carriers in high schools. Am J Hum Genet 59:793–798

    CAS  PubMed  PubMed Central  Google Scholar 

  22. Modell B (ed) (1989) Guidelines for control of haemoglobin disorders. WHO Working Group on Haemoglobinopathies. WHO_HDP_HB_GL_94.1.pdf

  23. NACO (2016) Blood Transfusion Services (BTS) data for FY 2015–2016. National AIDS Control Organization, Government of India http://naco.gov.in/sites/default/files/BTS%20Data%202015-16.pdf

    Google Scholar 

  24. NACO (2017) Blood Transfusion Services (BTS) data for FY 2016–2017. National AIDS Control Organization, Government of India http://naco.gov.in/blood-transfusion-services-publications

    Google Scholar 

  25. Nakatsuka N, Moorjani P, Rai N, Sarkar B, Tandon A, Patterson N, Bhavani GS, Girisha KM, Mustak MS, Srinivasan S, Kaushik A, Vahab SA, Jagadeesh SM, Satyamoorthy K, Singh L, Reich D, Thangaraj K (2017) The promise of discovering population-specific disease-associated genes in South Asia. Nat Genet 49:1403–1407

    CAS  Article  Google Scholar 

  26. National Health Mission Guidelines on Hemoglobinopathies in India (2016) Prevention and Control of Hemoglobinopathies in India. National Health Mission, Ministry of Health & Family Welfare, Government of India http://nhm.gov.in/images/pdf/programmes/RBSK/Resource_Documents/Guidelines_on_Hemoglobinopathies_in%20India.pdf

    Google Scholar 

  27. Old J, Angastiniotis M, Eleftheriou A, Hartveld C, Petrou M, Traeger-Synodinos J (2013) Prevention of thalassaemias and other haemoglobin disorders Volume 1: principles, 2nd edn. Thalassaemia International Federation, Cyprus

    Google Scholar 

  28. Piel FB, Patil AP, Howes RE, Nyangiri OA, Gething PW, Dewi M, Temperley WH, Williams TN, Weatherall DJ, Hay SI (2013) Global epidemiology of sickle haemoglobin in neonates: a contemporary geostatistical model-based map and population estimates. Lancet 381:142–151

    Article  Google Scholar 

  29. Population Projections for India and States 2001-2026 (2006) Report of the technical group on population projections constituted by the National Commission on Population, Registrar General & Census Commissioner, India. Office of the Registrar General & Census Commissioner, New Delhi

    Google Scholar 

  30. Rees DC, Brouse VAM (2016) Sickle cell disease: status with particular reference to India (Editorial). Ind J Med Res 143:675–677

    Article  Google Scholar 

  31. Registrar General of India (2017) Sample Registration System, Vital Statistics Division, Office of the Registrar General of India, New Delhi. SRS Bulletin 51(1):1 http://censusindia.gov.in/vital_statistics/SRS_Bulletins/Bulletins.html

  32. Sharma S, Seth B, Jawade P, Ingale M, Setia MS (2017) Quality of life in children with thalassemia and their caregivers in India. Ind J Pediatr 84:188–194

    Article  Google Scholar 

  33. Sinha S, Black ML, Agarwal S, Colah R, Das R, Ryan K, Bellgard M, Bittles AH (2009) Profiling β-thalassaemia mutations in India at state and regional levels: implications for genetic education, screening and counseling programmes. HUGO J 3:51–62

    CAS  Article  Google Scholar 

  34. Sinha S, Black ML, Agarwal S, Das R, Bittles AH, Bellgard M (2011) ThalInd, a β-thalassaemia and hemoglobinopathies database for India: defining a model country-specific and disease-centric bioinformatics resource. Hum Mutat 32:887–893

    CAS  Article  Google Scholar 

  35. SRS Bulletins, Sample Registration System, Registrar General, India. Published by office of the Registrar General, India, Ministry of Home Affairs, Government of India. http://censusindia.gov.in/vital_statistics/SRS_Bulletins/Bulletins.html

  36. Trehan A, Sharma N, Das R, Bansl D, Marwaha RK (2015) Clinico-investigational and demographic profile of children with thalassemia major. Ind J Hematol Blood Transfus 31:121–126

    Article  Google Scholar 

  37. World Population Data Sheet (2018) Population Reference Bureau, Washington DC. http://www.prb.org/wp-content/uploads/2018/08/2018_WPDS.pdf

  38. World Population Datasheet (2016) Population Reference Bureau, Washington DC. http://www.prb.org/pdf16/prb- wpds2016-web-2016.pdf

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Contributions

SS prepared the first draft with calculation of projected estimates, data sources and other literature references. TS checked all the initial data, helped in preparing first draft and contributed in revising the manuscript. RC provided inputs, rigorously cross-checked all source data and estimates and contributed in editing the text and tables. AHB majorly contributed in providing context to the expressed opinion and in revising the manuscript to its final format.

Corresponding author

Correspondence to Sujata Sinha.

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Permission for the use of anonymised data on blood requirements of thalassaemia patients was provided by each of the four collaborating centres.

Conflict of interest

In 2017, AHB acted as consultant on consanguinity for Merck, Sharp and Dohme. SS, TS and RC have nothing to disclose.

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Sinha, S., Seth, T., Colah, R.B. et al. Haemoglobinopathies in India: estimates of blood requirements and treatment costs for the decade 2017–2026. J Community Genet 11, 39–45 (2020). https://doi.org/10.1007/s12687-019-00410-1

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Keywords

  • Thalassaemia
  • Sickle cell disease
  • India
  • Transfusion needs
  • Health budget
  • Public health