Social scientists and the new tuberculosis

Social Science and Medicine

Volumn 44, Issue 3, 1997, Pages 347-358

  Farmer, Paul ^a  

^a BRIGHAM AND WOMEN S HOSPITAL   (United States)

Author keywords

Compliance; Multi drug resistance; Social factors; Tuberculosis

Indexed keywords

ADULT; ARTICLE; CASE REPORT; HAITI; HOMELESSNESS; HUMAN; HUMAN IMMUNODEFICIENCY VIRUS INFECTION; MALE; MULTIDRUG RESISTANCE; POVERTY; SOCIAL ASPECT; SOCIAL PROBLEM; TUBERCULOSIS; UNITED STATES; URBAN POPULATION; VIOLENCE;

ADULT; AIDS-RELATED OPPORTUNISTIC INFECTIONS; ANTITUBERCULAR AGENTS; CAUSALITY; CONTACT TRACING; DRUG RESISTANCE, MULTIPLE; FEMALE; HAITI; HOMELESS PERSONS; HUMANS; MALE; POVERTY; RISK FACTORS; SOCIAL SCIENCES; TUBERCULOSIS, PULMONARY; UNITED STATES; URBAN POPULATION;

EID: 0031035690     PISSN: 02779536     EISSN: None     Source Type: Journal    
DOI: 10.1016/S0277-9536(96)00143-8     Document Type: Article

References (63)

1. Ryan, F. (1993) The Forgotten Plague: How the Battle Against Tuberculosis Was Won - and Lost. Little, Brown, Boston.
2. Bloom, B. and Murray, C. (1992) Tuberculosis: commentary on a resurgent killer. Science 257, 1055.
3. Iseman, M. (1985) Tailoring a time-bomb. American Review of Respiratory Diseases 132, 735.
4. Centers for Disease Control (1993) Meeting the challenge of multidrug-resistant tuberculosis: summary of a conference. Morbidity and Mortality Weekly Report 41(RR-11), 52.
5. Snider, D. and Roper, W. (1992) The new tuberculosis. New England Journal of Medicine 326, 703.
6. Mann, J., Tarantola, D. and Netter, T. (Eds) (1992) AIDS in the World. Harvard University Press, Cambridge, MA.
7. A third mechanism, exogenous reinfection with a resistant strain, has recently been described among those with HIV infection. See Small P., Shafer R., Hopewell P. et al. (1993) Exogenous reinfection with multidrug-resistant Mycobacterium tuberculosis in patients with advanced HIV infection. New England Journal of Medicine 328, 1137. Exogenous reinfection may even occur in immunocompetent patients (Small, personal communication).
8. Frieden and co-workers recently reported that "the tide is turning" due to improved TB-control strategies. See Frieden, T., Fujiwara, P., Washko, R., and Hamburg, M. (1995) Tuberculosis in New York City - turning the tide. New England Journal of Medicine 333, 229.
9. For an excellent overview of the effects of these changes in TB policy, see Brudney, K. and Dobkin, J. (1991) Resurgent tuberculosis in New York City: human immunodeficiency virus, homelessness, and the decline of tuberculosis control programs. American Review of Respiratory Disease 144, 745.
10. Goble, M., Iseman, M. and Madsen, L. (1993) Treatment of 171 patients with pulmonary tuberculosis resistant to isoniazid and rifampin. New England Journal of Medicine 328, 527. The Centers for Disease Control recently reported the case of an individual with MDR TB who exposed nine family members and friends. Care for these ten persons alone exceeded $1000000. See CDC (1990) Outbreak of multi-drug resistant tuberculosis - Texas, California, and Pennsylvania. Morbidity and Mortality Weekly Report 39, 369.
11. Goble, M., Iseman, M. and Madsen, L. (1993) Treatment of 171 patients with pulmonary tuberculosis resistant to isoniazid and rifampin. New England Journal of Medicine 328, 527. The Centers for Disease Control recently reported the case of an individual with MDR TB who exposed nine family members and friends. Care for these ten persons alone exceeded $1000000. See CDC (1990) Outbreak of multi-drug resistant tuberculosis - Texas, California, and Pennsylvania. Morbidity and Mortality Weekly Report 39, 369.
12. Iseman, M. (1993) Treatment of multidrug-resistant tuberculosis. New England Journal of Medicine 9, 784.
13. Dubos, R. and Dubos, J. (1992) The White Plague: Tuberculosis, Man, and Society, 2nd edition. Rutgers University Press, New Brunswick, NJ.
14. Sumartojo, E. (1993) When tuberculosis treatment fails: a social behavioral account of patient adherence. American Review of Respiratory Disease 147, 1311. Dr Sumartojo prefers the term "adherence".
15. World Health Organization (1991) Guidelines for Tuberculosis Treatment in Adults and Children in National Tuberculosis Programmes. World Health Organization, Geneva.
16. Farmer, P. (1996) On suffering and structural violence - a view from below. Daedalus 125, 261.
17. Margono, F., Garely, A., Mroueh, J. and Minkoff, H. (1993) Tuberculosis among pregnant women - New York City, 1985-1992. Morbidity and Mortality Weekly Report 42, 605. Although biological universals are important - cell-mediated immunity wanes during pregnancy - TB is strikingly patterned even among pregnant women. Poor, urban women of color are disproportionately affected among U.S. women. See also, Snider D. (1992) The impact of tuberculosis on women, children and minorities in the United States. World Congress on Tuberculosis. Bethesda, Abstract C1.
18. Margono, F., Garely, A., Mroueh, J. and Minkoff, H. (1993) Tuberculosis among pregnant women - New York City, 1985-1992. Morbidity and Mortality Weekly Report 42, 605. Although biological universals are important - cell-mediated immunity wanes during pregnancy - TB is strikingly patterned even among pregnant women. Poor, urban women of color are disproportionately affected among U.S. women. See also, Snider D. (1992) The impact of tuberculosis on women, children and minorities in the United States. World Congress on Tuberculosis. Bethesda, Abstract C1.
19. For a review of these data, see Farmer, P., Robin, S., Ramilus, St.-L. and Kim, J. Y. (1991) Tuberculosis, poverty, and "compliance": lessons from rural Haiti. Seminars in Respiratory Infections 6, 254.
20. Scalcini, M., Carre, G., Jean-Baptiste, M., Hershfield, E., Parker, S., Wolfe, J., Nelz, K. and Long, R. (1990) Antituberculous drug resistance in central Haiti. American Review of Respiratory Disease [Suppl.] 142(3), 508.
21. For a more in-depth discussion of Haitian understandings of TB, see Farmer, P. (1992) AIDS and Accusation: Haiti and the Geography of Blame. University of California Press, Berkeley.
22. The case of Robert David led us to search more aggressively for other cases of MDR TB. Two other patients were also discovered to be infected with multiply-resistant strains. The resistance patterns were different from the strain infecting Robert David.
23. Iseman [11], p. 784.
24. Scalcini et al. [18], p. 509.
25. Weise, H. J. C. (1974) Tuberculosis in rural Haiti. Social Science and Medicine 8, 359.
26. Rubel, A. and Garro, L. (1992) Social and cultural factors in the successful control of tuberculosis. Public Health Report 107, 626.
27. Farmer et al. [55], p. 259. Pierre Chaulet, writing from Algeria, makes a similar point after deriding providers' tendencies to blame patients for treatment failures: "In developing countries, noncompliance with anti-tuberculosis chemotherapy is less often due to the patient's failure to comply with treatment than to other factors." See Chaulet, P. (1987) Compliance with anti-tuberculosis chemotherapy in developing countries. Tubercle [Suppl.] 68, 19.
28. de Villiers, S. (1991) Tuberculosis in anthropological perspective. South African Journal of Ethnology 14, 69.
29. Nightingale, E. O., Hannibal, K., Geiger, H. J., Hartmann, L., Lawrence, R. and Spurlock, J. (1990) Apartheid medicine. Health and human rights in South Africa. Journal of the American Medical Association 264(16), 2097.
30. Packard, R. (1989) White Plague, Black Labor: Tuberculosis and the Political Economy of Health and Disease in South Africa. University of California Press, Berkeley.
31. Mata, J. I. (1985) Integrating the client's perspective in planning a tuberculosis education and treatment program in Honduras. Medical Anthropology 9(1), 57.
32. Mata [29], p. 59.
33. Quotations drawn from Mata [29], pp. 62, 60, 61, 58.
34. Mata [29], pp. 62-63.
35. Barnhoorn, F. and Adriaanse, H. (1992) In search of factors responsible for noncompliance among tuberculosis patients in Wardha District, India. Social Science and Medicine 34, 291.
36. Barnhoorn and Adriaanse [33], pp. 299, 302.
37. Barnhoorn and Adriaanse [33], pp. 291, 301, 302.
38. Rubel and Garro [24], p. 630 (emphasis added), referring to a paper by Lieban R. (1976) Traditional medical beliefs and the choice of practitioners in a Philippine city. Social Science and Medicine 10, 289.
39. Cited in Sumartojo [13], p. 1314.
40. Rubel and Garro [24], p. 630.
41. Friemodt-Möller, J. (1968) Domiciliary drug therapy of pulmonary tuberculosis in a rural population in India. Tubercle 49 [Suppl.], 22. In most studies, improving the quality of services inevitably results in drastic improvements in outcomes. In discussion of tuberculous meningitis in urban India, where access to care was significantly better, one large study found that "default was not a very serious problem, despite the fact that about half the patients come from outside Madras City. Patients attended punctually on 90% of occasions. Furthermore, in 95% of the remaining unpunctual occasions, drugs were missed for less than a week which, as there was no proper retrieval action, is very commendable. All those who attended late had valid reasons for their unpunctuality." See Ramachandran, P. and Prabhakar, R. (1992) Defaults, defaulter action and retrieval of patients during studies of tuberculous meningitis in children. Tubercle and Lung Disease 73, 170. See also Grange J. and Festenstein F. (1993) The human dimension of tuberculosis control. Tubercle and Lung Disease, 74, 219.
42. Friemodt-Möller, J. (1968) Domiciliary drug therapy of pulmonary tuberculosis in a rural population in India. Tubercle 49 [Suppl.], 22. In most studies, improving the quality of services inevitably results in drastic improvements in outcomes. In discussion of tuberculous meningitis in urban India, where access to care was significantly better, one large study found that "default was not a very serious problem, despite the fact that about half the patients come from outside Madras City. Patients attended punctually on 90% of occasions. Furthermore, in 95% of the remaining unpunctual occasions, drugs were missed for less than a week which, as there was no proper retrieval action, is very commendable. All those who attended late had valid reasons for their unpunctuality." See Ramachandran, P. and Prabhakar, R. (1992) Defaults, defaulter action and retrieval of patients during studies of tuberculous meningitis in children. Tubercle and Lung Disease 73, 170. See also Grange J. and Festenstein F. (1993) The human dimension of tuberculosis control. Tubercle and Lung Disease, 74, 219.
43. Friemodt-Möller, J. (1968) Domiciliary drug therapy of pulmonary tuberculosis in a rural population in India. Tubercle 49 [Suppl.], 22. In most studies, improving the quality of services inevitably results in drastic improvements in outcomes. In discussion of tuberculous meningitis in urban India, where access to care was significantly better, one large study found that "default was not a very serious problem, despite the fact that about half the patients come from outside Madras City. Patients attended punctually on 90% of occasions. Furthermore, in 95% of the remaining unpunctual occasions, drugs were missed for less than a week which, as there was no proper retrieval action, is very commendable. All those who attended late had valid reasons for their unpunctuality." See Ramachandran, P. and Prabhakar, R. (1992) Defaults, defaulter action and retrieval of patients during studies of tuberculous meningitis in children. Tubercle and Lung Disease 73, 170. See also Grange J. and Festenstein F. (1993) The human dimension of tuberculosis control. Tubercle and Lung Disease, 74, 219.
44. Chaulet puts this sharply in an editorial castigating health care professionals for their non-compliance: "It is only after these general measures have been applied that we can turn our attention to improving compliance." Chaulet, P. (1987) Compliance with anti-tuberculosis chemotherapy in developing countries. Tubercle [Suppl.] 68, 19.
45. Menzies, R., Rocher, I. and Vissandjee, B. (1993) Factors associated with compliance in treatment of tuberculosis. Tubercle and Lung Disease 74, 32.
46. For sharply divergent interpretations of TB control, see the disturbing essay by Steven Nachman, an anthropologist who briefly worked among Haitians detained by the U.S. Immigration and Naturalization Service: Nachman, S. (1993) Wasted lives: tuberculosis and other health risks of being Haitian in a U.S. detention camp. Medical Anthropology Quarterly 7, 227. Nachman offers compelling ethnography without making immodest claims of causality. For a review stressing the importance of patients' perspectives, see Conrad, P. (1985) The meaning of medications: another look at compliance. Social Science and Medicine 20, 29. Too few of the papers reviewed underline the enormous difference between failure to adhere to an INH prophylaxis regimen and failure to adhere to treatment for active disease.
47. For sharply divergent interpretations of TB control, see the disturbing essay by Steven Nachman, an anthropologist who briefly worked among Haitians detained by the U.S. Immigration and Naturalization Service: Nachman, S. (1993) Wasted lives: tuberculosis and other health risks of being Haitian in a U.S. detention camp. Medical Anthropology Quarterly 7, 227. Nachman offers compelling ethnography without making immodest claims of causality. For a review stressing the importance of patients' perspectives, see Conrad, P. (1985) The meaning of medications: another look at compliance. Social Science and Medicine 20, 29. Too few of the papers reviewed underline the enormous difference between failure to adhere to an INH prophylaxis regimen and failure to adhere to treatment for active disease.
48. Cited in Rubel and Garro [24], p.627.
49. Rubel and Garro [24].
50. Sumartojo [13], p. 1316.
51. Brudney, K. and Dobkin, J. (1991) A tale of two cities: tuberculosis control in Nicaragua and New York City. Seminars in Respiratory Infections 6, 261.
52. Onoge, O. (1975) Capitalism and public health: a neglected theme in the medical anthropology of Africa. In Topias and Utopias in Health, eds., S. Ingman and A. Thomas. Mouton, The Hague. Medical anthropologists are not the only ones who lend importance to factors that cannot be considered central in the shaping of TB pandemics. While René Dubos was at times hardbitten in his assessments, calling TB "the first penalty that capitalistic society had to pay for the ruthless exploitation of labor," he saw TB as a reflection of humans' failure to adapt harmoniously with the environment. This failure was most obvious in the "anonymous gloom of the industrial cities" of the nineteenth century, and had replaced the more sensible pastoral lifestyle that had reigned prior to industrial revolution: "The most destitute villager in his native land had learned to adorn the dullness and drudgery of existence with bright ribbons and jolly tunes, and with the pageantry of his church" (Dubos and Dubos [12], pp. 207, 202).
53. For an excellent review, see Porter, J. and McAdam, K. (1994) The re-emergence of tuberculosis. Annual Review of Public Health 15, 303.
54. Bloom and Murray [2].
55. Addington, W. (1979) Patient compliance: the most serious remaining problem in the control of tuberculosis in the United States. Chest 76, 741.
56. Sumartojo [13], p. 1312.
57. Rosenkrantz, in her excellent introduction to Dubos and Dubos [12], p. xxi.
58. McMichael, A. (1995) The health of persons, populations, and planets: epidemiology comes full circle. Epidemiology 6, 633.
59. See, for example, Patel, M. (1987) Problems in the evaluation of alternative medicine. Social Science and Medicine 25, 669.
60. Farmer, P. (1992) New disorder, old dilemmas: AIDS and anthropology in Haiti. In The Time of AIDS, eds. G. Herdt and S. Lindenbaum. Sage, Los Angeles.
61. See, for example, the review by Small, P. and Moss, A. (1993) Molecular epidemiology and the new tuberculosis. Infections and Agents of Disease 2, 132.
62. Sumartojo [13], p. 1318.
63. Rosenkrantz, in Dubos and Dubos [12], p. xxxiv.