Abstract
In the late 1950s and early 1960s, the teratogenic drug thalidomide caused an epidemicĀ of serious birth defects. Thalidomide embryopathy in its severest form produced limb reduction defects and other malformations, causing severe disability in survivors. This article uses the thalidomide incident as a case study to illustrate the health and social welfare responses that were put into place to address the needs of children born with disabilities and their families. These health and social service activities represent the core functions of a birth defects service. While thalidomide left its impact on industrialized countries, fifty years later, another teratogen, the Zika virus, threatened low- and middle-income countries. Congenital Zika virus syndrome, another disabling birth defect, is marked by severe microcephaly and intellectual disability in survivors. The article briefly compares the global health response to this teratogen five decades after the thalidomide episode, identifying that health systems of low- and middle-income countries still lack the preparedness to address severe birth defects caused by an unexpected teratogen.
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References
Stevenson RE, Hall JG (2015) Introduction. In: Stevenson RE, Hall JG, Everman DB, Solomon BD (eds) Human anomalies and related anomalies, No. 66. Oxford University Press
Were WM, Daelmans B, Bhutta Z, Duke T, Bahl R, Boschi-Pinto C, Bhan MK (2015) Childrenās health priorities and interventions. BMJ (Clin Res Ed) 351:h4300
Vargesson N (2013) Thalidomide embryopathy: an enigmatic challenge. ISRN Dev Biol 241016. https://doi.org/10.1155/2013/24101
Vargesson N (2015) Thalidomide-induced teratogenesis: history and mechanisms. Birth Defects Res C Embryo Today 105(2):140ā156
Taussig HB (1962) A study of the German outbreak of phocomelia. The thalidomide syndrome. JAMA 180:1106ā1114
Kim JH, Scialli AR (2011) Thalidomide: the tragedy of birth defects and the effective treatment of disease. Toxicol Sci 122(1):1ā6
Ito T, Ando H, Handa H (2011) Teratogenic effects of thalidomide: molecular mechanisms. Cell Mol Life Sci 68(9):1569ā1579
Emanuel M, Rawlins M, Duff G, Breckenridge A (2012) Thalidomide and its sequelae. Lancet 380(9844):781ā783
Rajkumar SV (2004) Thalidomide: tragic past and promising future. Mayo Clin Proc 79(7):899ā903
Clow B (2008) Defining disability, limiting liability: the care for thalidomide victims in Canada. In: Heaman EA, Li A, McKellar S (eds) Essays in honor of Michael Bliss: figuring the social. University of Toronto Press
Newbronner E, Atkin K (2018) The changing health of thalidomide survivors as they age: a scoping review. Disabil Health J 11(2):184ā191
Fetal thalidomide syndrome. Genetic and Rare Disease Information Centre, National Centre for Advancing Translational Sciences, National Institute of Health. Available at https://rarediseases.info.nih.gov/diseases/2313/fetal-thalidomide-syndrome. Accessed 8 Nov 18
Smithells RW, Newman CGH (1992) Recognition of thalidomide defects. J Med Genet 29:716ā723
Lenz W (1988) A short history of thalidomide embryopathy. Teratology 38(3):203ā215
McBride W (1961) Thalidomide and congenital malformations. Lancet 1:358
Smithells RW (1973) Defects and disabilities of thalidomide children. Br Med J 1(5848):269ā272
Ingalls TH, Klingberg M (1965) Implications of epidemic embryopathy for public health. Am J Public Health Nations Health 55(2):200ā208
Mongeau M, Gingras G, Sherman ED, Hebert B, Hutchison J, Corriveau C (1966) Medical and psychosocial aspects of the habilitation of thalidomide children. Can Med Assoc J 95(9):390ā395
Martin JK, Rathbun JC (1963) Habilitation of patients with congenital malformations associated with thalidomide: pediatric aspects. Can Med Assoc J 88(19):959ā962
Bent N, Tennant A, Neumann V, Chamberlain MA (2007) Living with thalidomide: health status and quality of life at 40 years. Prosthet Orthot Int 31(2):147ā156
Gingras G, Mongeau M, Moreasult P, Dupuis M, Herbert B, Corriveau C (1964) Congenital anomalies of the limbs II. Psychological and educational aspects. Can Med Assoc J 91:115ā119
DāAvignon M, Hellgren K, Juhlin I, AtterbƤck B (1967) Diagnostic and habilitation problems of thalidomide-traumatized children with multiple handicaps. Dev Med Child Neurol 9:707ā712
Support for Australiaās thalidomide survivors. Submission 4. The experience of UK-thalidomide damaged people (thalidomiders) and the British governmentās financial support. Available at file:///C:/Users/jayanta%20Pal/Downloads/sub04_UKTCT.pdf. Accessed 2 Nov 2018
Klausen SM, Parle J (2015) āAre we going to stand by and let these children come into the world?ā: the impact of the āthalidomide disasterā in South Africa, 1960ā1977. J South Afr Stud 41(4):735ā752
Peters KM, Albus C, LĆ¼ngen M, Niecke A, Pfaff H, Samel C (2015) Damage to health, psychosocial disorders and care requirements of thalidomide survivors in North Rhine Westphalia from a long-term perspective. Expert Opinion Commissioned by LZG.NRW Federal Health Centre North Rhine Westphalia (LZG.NRW), WesterfeldstraĆe. Available at https://www.thalidomidetrust.org/wp-content/uploads/2016/10/The-Cologne-Report.pdf. Accessed 8 Nov 2018
Editorial (1963) Rehabilitation of thalidomide-deformed children. Can Med Assoc J 83:488ā489
Correa-VillaseƱor A, Cragan J, Kucik J, OāLeary L, Siffel C, Williams L (2003) The Metropolitan Atlanta Congenital Defects Program: 35 years of birth defects surveillance at the Centers for Disease Control and Prevention. Birth Defects Res A Clin Mol Teratol 67(9):617ā624
Botto LD, Robert-Gnansia E, Siffel C, Harris J, Borman B, Mastroiacovo P (2006) Fostering international collaboration in birth defects research and prevention: a perspective from the International Clearinghouse for Birth Defects Surveillance and Research. Am J Public Health 96(5):774ā780
Junod SW. FDA and clinical drug trials: a short history. US Food and Drug Administration. Available at https://www.fda.gov/downloads/AboutFDA/History/ProductRegulation/UCM593494.pdf. Accessed 8 Nov 2018
Tantibanchachai C (2014) US regulatory response to thalidomide (1950ā2000). Embryo Project Encyclopedia. ISSN: 1940-5030 https://embryo.asu.edu/handle/10776/7733
Fornasier G, Francescon S, Leone R, Baldo P (2018) An historical overview of pharmacovigilance. Int J Clin Pharm 40:744
Mosley JF 2nd, Smith LL, Dezan MD (2015) An overview of upcoming changes in pregnancy and lactation labeling information. Pharm Pract (Granada) 13(2):605
Parker C (2012) From immorality to public health: thalidomide and the debate for legal abortion. Aust Soc Hist Med 25(4):863ā880
Lachmann PJ (2012) The penumbra of thalidomide, the litigation culture and the licensing of pharmaceuticals. QJM 105(12):1179ā1189
Sales Luiz Vianna F, Kowalski TW, Fraga LR, Sanseverino MT, Schuler-Faccini L (2017) The impact of thalidomide use in birth defects in Brazil. Eur J Med Genet 60(1):12ā15
Moro A, Invernizzi N (2017) The thalidomide tragedy: the struggle for victimsā rights and improved pharmaceutical regulation. Hist Cienc Saude Manguinhos 24(3):603ā622
Rasmussen SA, Jamieson DJ, Honein MA, Petersen LR (2016) Zika virus and birth defectsāreviewing the evidence for causality. N Engl J Med 374(20):1981ā1987
Baud D, Gubler DJ, Schaub B, Lanteri MC, Musso D (2017) An update on Zika virus infection. Lancet 390(10107):2099ā2109
Sampathkumar P, Sanchez JL (2016) Zika virus in the Americas: a review for clinicians. Mayo Clin Proc 91(4):514ā521
FranƧa GV, Schuler-Faccini L, Oliveira WK, Henriques CM, Carmo EH, Pedi VD et al (2016) Congenital Zika virus syndrome in Brazil: a case series of the first 1501 livebirths with complete investigation. Lancet 388(10047):891ā897
World Health Organization. Zika virus and complications: 2016 public health emergency of international concern. Available at https://www.who.int/emergencies/zika-virus-tmp/en/. Accessed 8 Nov 2018
World Health Organization. Zika strategic response plan revised for July 2016-December 2017. World Health Organization. Available at https://apps.who.int/iris/bitstream/handle/10665/246091/WHO-Zikavirus-SRF-16.3-eng.pdf;jsessionid=7B8090D79000C866C2A2D8BDD9ACD76F?sequence=1. Accessed 8 Nov 2018
Moore CA, Staples JE, Dobyns WB, Pessoa A, Ventura CV, Fonseca EB et al (2017) Characterizing the pattern of anomalies in congenital Zika syndrome for pediatric clinicians. JAMA Pediatr 171(3):288ā295
Oussayef NL, Pillai SK, Honein MA et al (2017) Zika virusā10 public health achievements in 2016 and future priorities. MMWR Morb Mortal Wkly Rep 65:1482ā1488
Honein MA, Dawson AL, Petersen EE et al (2017) Birth defects among fetuses and infants of US women with evidence of possible Zika virus infection during pregnancy. JAMA 317(1):59ā68
Castro MC (2016) Zika virus and health systems in Brazil: from unknown to a menace. Health Syst Reform 2(2):119ā122
GĆ³mez EJ, Perez FA, Ventura D (2018) What explains the lacklustre response to Zika in Brazil? Exploring institutional, economic and health system context. BMJ Glob Health 3(5):e000862
SkrƄning S, Lindskog BV (2017) The Zika outbreak in Brazil: an unequal burden. Tidsskr Nor Laegeforen 137(22). Available at https://tidsskriftet.no/en/2017/11/global-helse/zika-outbreak-brazil-unequal-burden. Accessed Aug 2018
Souza WV, Albuquerque MFPM, Vazquez E, Bezerra LCA, Mendes ADCG, Lyra TM et al (2018) Microcephaly epidemic related to the Zika virus and living conditions in Recife, Northeast Brazil. BMC Public Health 18(1):130
Bailey DB Jr, Ventura LO (2018) The likely impact of congenital Zika syndrome on families: considerations for family supports and services. Pediatrics 141(Suppl 2):S180āS187
Dos Santos Oliveira SJG, Dos Reis CL, Cipolotti R, Gurgel RQ, Santos VS, Martins-Filho PRS (2017) Anxiety, depression, and quality of life in mothers of newborns with microcephaly and presumed congenital Zika virus infection: a follow-up study during the first year after birth. Arch Womens Ment Health 20(3):473ā475
Diniz D (2016) Zika virus and women. Cad Saude Publica 32(5):e00046316
World Health Organization (2016) Psychosocial support for pregnant women and for families with microcephaly and other neurological complications in the context of Zika virus. Interim guidance for health-care providers. WHO/ZIKV/MOC/16.6. World Health Organization, Geneva. Available at https://www.who.int/csr/resources/publications/zika/psychosocial-support/en/. Accessed 8 Nov 2018
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Kar, A. (2021). Thalidomide: Understanding the Responsibilities of a Birth Defects Service. In: Kar, A. (eds) Birth Defects in India. Springer, Singapore. https://doi.org/10.1007/978-981-16-1554-2_3
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