The Social Impact of AIDS in the United States (1993) / Chapter Skim
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1 Introduction and Summary
1 Introduction and Summary
Pages 1-22
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. These numbers identify the first and most obvious impact of the HIV/ AIDS epidemic on American society: the large population of infected, sick, and dying persons attacked by a previously unknown disease.
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This report is an unusual undertaking for the National Research Council. Its objective is to form a picture of the effects of the AIDS epidemic on selected social and cultural institutions in the United States and to describe how those institutions have responded to the impact of the epidemic.
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Persons and societies do not merely feel the impact of an event; they remake their lives and institutions to accommodate, negate, or preserve its effects. In this report, we attempt to capture and describe the process of impact and response of selected social institutions to the HIV/ AIDS epidemic.
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After extensive deliberation, the panel determined that it had sufficient information and understanding to describe social impact and response for six institutions (broadly defined) : the public health system health care finance and delivery clinical research and drug regulation .
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The AIDS epidemic has invoked comparison with many epidemics of the past. Most commonly, the bubonic plague (the Black Death)
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Our report suggests that, in some respects, the AIDS epidemic may be more like the influenza of 1918 than the bubonic plague of 1348: many of its most striking features will be absorbed in the flow of American life, but, hidden beneath the surface, its worst effects will continue to devastate the lives and cultures of certain communities.
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The convergence of evidence shows that the HIV/AIDS epidemic is settling into spatially and socially isolated groups and possibly becoming endemic within them. Many observers have recently commented that, instead of spreading out to the broad American population, as was once feared, HIV is concentrating in pools of persons who are also caught in the "synergism of plagues" (see Wallace, 19884: poverty, poor health and lack of health care, inadequate education, joblessness, hopelessness, and social disintegration converge to ravage personal and social life.
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We are concerned, however, that as the epidemic strikes with greater force in socially and economically deprived communities, the directions toward more communal involvement and respect for civil and personal liberties might be constricted and diverted. The panel believes that a failure by scientists and policy makers to appreciate the interaction between social, economic, and cultural conditions and the propagation of HIV/AIDS disease has often led to public misunderstanding and policy mistakes about the epidemic.
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A constant theme of this report and of the AIDS literature is the stigma, discrimination, and inequalities of the AIDS epidemic. At its outset, HIV disease settled among socially disvalued groups, and as the epidemic has progressed, AIDS has increasingly been an affliction of people who have little economic, political, and social power.
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Quarantine, mass mandatory testing, and contact tracing all had notable disadvantages in dealing with a disease with a long latency period, that was spread chiefly through sexual activity or intravenous drug use, and that largely affected already stigmatized groups. Spokesmen for the affected groups, particularly the gay community, advanced other methods of containment that relied on community education and voluntary anonymous testing.
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These problems have been complicated by the fact that many AIDS patients cannot pay for care, and thus the subset of the health care delivery system that provides care to indigent patients has absorbed the brunt of the epidemic. In the handful of cities that are the focus of the epidemic, there is a serious strain on the provider community, particularly public and voluntary teaching hospitals; in other cities, the capacity of hospitals to absorb AIDS inpatients is not as pressing a concern as are the stigma and inadequate reimbursement associated with AIDS care.
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It is impossible to assess the extent to which the HIV/AIDS epidemic has exacerbated staffing problems in hospitals and other institutional settings that care for AIDS patients; however, a shortage of nurses has been identified as a major obstacle to improved care of AIDS patients. All health professionals are at risk of HIV infection through exposure by accidental cuts or punctures incurred while caring for HIV-infected patients.
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Pressure to expand clinical trials into community-based physicians' practices has similarly posed difficult questions of how to organize and support such trials, what results can realistically be expected from them, and how to distinguish between ad hoc extensions of experimental therapies into community practice and clinical research that produces replicable results. Although these questions were thrust on the research community by the HIV/AIDS epidemic, they will quickly become relevant to many other fields of research as increasing numbers of patients and their advocates seek access to the newest therapies.
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Throughout the country, volunteer movements have carried a surprisingly large share of the burden of caring for AIDS patients, particularly outside hospitals. The cost of the epidemic for public agencies and private insurance has been significantly reduced by the extensive contributions of time and resources from volunteers.
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Some adherents of Christianity linked early church traditions that saw plague as a divine punishment for sinfulness in general with the single sin of male homosexuality. Even though the roots of this association in early Christian doctrine have been forgotten by most modern Christians, this ancient association seems to echo in the collective memory of those who are ready to view AIDS as divine punishment visited on homosexuals.
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In California and New Jersey, two states hit particularly hard by the epidemic, the number of inmates tripled during the same period. The incarcerated population in the United States comprises in large part impoverished individuals from urban areas.
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Social policy regarding family relationships is complex: specific law encodes certain features of policy, but much is embedded in practices formulated by public agencies, employers, and insurers practices that sometimes lead to litigation. Convinced of the importance of examining the impact of the epidemic on policies regarding families and children, yet aware of their extreme complexity, the panel undertook two case studies of the interaction between the epidemic, law, and public policy.
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Similarly, issues involved in caring for HIV-infected children or enrolling them in clinical trials of experimental therapies has starkly highlighted continuing arguments over the rights of biological parents versus the rights of foster parents or the state. In both cases, our study showed that there has as yet been no fundamental changes in broad policies, only changes in the clinical care and social services in certain communities.
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The New York City study makes particularly clear the panel's major findings and conclusions in the context of specific local institutions and their management of issues presented by the epidemic. HIV disease in New York City occurs increasingly in the context of socioeconomic and ethnic deprivation, as well as among populations already suffering high levels of morbidity and mortality.
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In order to get art estimate of H8i and HE before the end of 1984, one must forecast AN and AN by extrapolating the prior time series of new AIDS cases or directly forecast H8i and HE by extrapolating the estimated prior time series of new lIIV infections. This simple model can be used to identify three sources of uncertainty
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(1991) Reconstriuction and future trends of the AIDS epidemic in the United States.
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(1989) AIDS: Sexual Behavior and Intravenous Drug Use.
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