The History Of Aids Psychiatry

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In 1981, previously healthy young men and women were being admitted with pneumonia and severe respiratory distress to the intensive care unit of our municipal academic medical center in New York City. They were dying of respiratory failure. The reason for these deaths was not clear. At about the same time, Michael Gottlieb, an immunologist in an academic medical center in Los Angeles, California, began to investigate the reasons for the occurrence of Pneumocystis carinii pneumonia (PCP) in five previously healthy young men. On June 5, 1981, his report of these cases was published in the Morbidity and Mortality Weekly Report (CDC, 1981a). Gottlieb's first patients were also described as having cytomegalovirus and candida infections.

As a result of the publication of this report, specialists in pulmonary medicine, internal medicine, and infectious disease at our hospital as well as other hospitals recognized that the young men and women were severely ill with PCP and this new disease and that in addition to intensive medical treatment, some would benefit from psychiatric consultations to help them to cope with this devastating illness.

In a more detailed article, published on December 10, 1981, in the New England Journal of Medicine, Gottlieb and colleagues (1981) linked an immune deficiency with this new cluster of infections. They presented evidence for an association ofthe illnesses PCP, candidiasis, and multiple viral infections and "a new acquired cellular immunodeficiency'' with a decrease in CD4 T cells as a hallmark. Another article (Masur et al., 1981) described this "outbreak of community-acquired Pneumocystis carinii pneumonia'' as a manifestation of an "immune deficiency." Over the next year, several other articles described the opportunistic infections and cancers that characterized this new syndrome of immune deficiency, including not only Pneumocystis carinii (now named Pneumocystis jeroveci) pneumonia but also cytomegalovirus retinitis, central nervous system toxoplasmosis, progressive multifocal leukoencephalopathy, disseminated Kaposi's sarcoma, and central nervous system lymphoma. Initially, the immune deficiency was thought to occur only in gay men (CDC, 1981b), but later in 1981 and in 1982 it became clear that this acquired immune deficiency syndrome, or AIDS, as it came to be called in 1982 (CDC, 1982a), was transmitted by exchange of blood or body fluids through sexual contact, including heterosexual contact (CDC, 1983), sharing of needles or drug paraphernalia in intravenous drug use (CDC, 1982a), through transfusions of contaminated blood and blood products (CDC, 1982b), and through perinatal transmission (CDC, 1982c). When it became evident that this immune deficiency might itself have an infectious etiology and that it led to rapidly fatal complications, many staff members became fearful of the possibility of contagion. An "epidemic of fear'' (Hunter, 1990) began to develop along with the AIDS epidemic. As a result, some persons with AIDS who were admitted to hospitals for medical care experienced difficulty getting their rooms cleaned, obtaining water or food, or even getting adequate medical attention.

At our hospital, initial psychiatric consultations for persons with AIDS were requested for depression, withdrawal, confusion, and treatment refusal. As the psychiatrist responding to these initial consultations, it was clear to me that the uncertainty about the etiology of the immune deficiency had resulted in palpable fear of contagion in staff. This fear was leading to distress and an increase in frequency of absences and requests for transfers away from the floors with the most AIDS admissions. These reactions in staff members seemed to heighten the sense of isolation and depression in patients.

Although the AIDS epidemic was first described in the medical literature in 1981, it was not until 1983 that the first articles were published about the psychosocial or psychiatric aspects of AIDS. The first article, written by Holtz and colleagues (1983), was essentially a plea for attention to the psychosocial aspects of AIDS. They stated that "noticeably absent in the flurry of publications about the current epidemic of acquired immune deficiency syndrome (AIDS) is reference to the psychosocial impact of this devastating new syndrome.'' The authors deplored ostracism of persons with AIDS by both their families and their medical systems of care. These authors were the first to describe the profound withdrawal from human contact as the "sheet sign'' observed when persons with AIDS hid under their sheet and completely covered their faces. The first psychiatrist to address these issues was Stuart E. Nichols (1983). In his article in Psy-chosomatics, Nichols described the need for compassion, support, and understanding to address the fear, depression, and alienation experienced by patients. He also made recommendations for use of psychotherapy and group therapy as well as antidepressant medications to help persons with AIDS cope with intense feelings about this new illness that was still of undetermined etiology. Nichols stated: "Since AIDS apparently is a new disease, there is no specific psychiatric literature to which one can refer for guidance. One must be willing to attempt to provide competent and compassionate care in an area with more questions than answers.'' The earliest articles published in the first decade of AIDS psychiatry, from 1983 to 1993, were primarily descriptive observations, case reports, case series, and documentation and prevalence of psychiatric diagnoses associated with AIDS. They were written by sensitive and compassionate clinicians, some of whom openly expressed their outrage at ostracism and rejection of persons with HIV and AIDS by not only the community at large but also by the medical community. These clinicians also emphasized the need for compassion and for competent medical and psychiatric care. These early articles are summarized in Table 1.1.

In the 23 years (1983-2006) since AIDS psychiatry references first appeared in the medical literature, there have been 14,248 articles written (according to PubMed, accessed on March 19, 2007), in addition to a textbook (Fernandez and Ruiz, 2006), other books (Treisman et al., 2004), and numerous chapters. Most of the articles reflect a growing body of research in the area as well as the beginnings of an evidence base for the practice of AIDS psychiatry. Some of these articles provide evidence for the need for a comprehensive biopsychosocial approach to the care of persons with HIV and AIDS.

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