Chapter 9

The Structure of Society: Organizations and Social Institutions

AIDS Epidemic

We usually don't think of the spread of deadly disease as an organizational or institutional issue. Epidemics occur because people infect one another. But the social response to an epidemic can have a great impact on its progress.

Consider the AIDS epidemic, which was first identified in 1981.¹ By the time President Ronald Reagan first spoke of the disease publicly—in 1985, after actor Rock Hudson's death—more than 20,000 people had already died from it.² That year the federal government allocated only about $100 million for AIDS research; the total provided by the states for research, patient care, and education amounted to about $9 million.

In contrast, 10 years earlier President Gerald Ford had authorized $135 million for a nationwide inoculation program against swine flu. By the time that program ended, only 107 cases of swine flu had been reported, and only 58 people had died from it.³

Today, of course, funding for AIDS treatment, research, and prevention is in the billions. But why did it take so long for the magnitude of the epidemic to be recognized by the public, the government, and the scientific community? Part of the reason was the stigmatized identity of the majority of the earliest victims—gay men, intravenous drug users, and so on. To many citizens, AIDS was self-inflicted punishment for unnatural and repugnant behavior. Such prejudice existed even among the scientific community in the mid-1980s: Researchers reaped little prestige from studying a "homosexual disease."⁴

Although homophobia no doubt played a role in the slow response to AIDS, sociologists Charles Perrow and Mauro Guillen argue that this explanation is insufficient.⁵ They point out that the epidemic did not increase intolerance of and repression against homosexuals and intravenous drug users. Certainly discrimination against these groups exists in this country. But it is not officially and overtly sanctioned. Perrow and Guillen offer a more pervasive, although not immediately apparent, explanation: organizational failure. The organizational structure that was set up at the time—the government, medical research firms, hospitals, and so on—was ill equipped to deal with the AIDS epidemic.

Ironically, the essential facts about the disease—that it is a blood-borne virus infecting men and women whether gay or straight, that it can be passed on by a mother to her unborn child, and that it can be prevented by relatively cheap measures (for example, condoms)—were well known early on. Yet for several years, the government, the medical community, and even the gay community mounted no public education campaign. In those early years, most of the at-risk population was visible, accessible, and geographically concentrated in small areas of major cities such as New York and San Francisco. It would have been relatively easy and cheap to implement a massive educational effort to stop the spread of the disease.⁶

But 2 years after the epidemic began, the total of the government's attempts to prevent the spread of AIDS among gay men was two sentences of guidance: "Sexual contact should be avoided with persons known or suspected to have AIDS. Members of high-risk groups should be aware that multiple sexual partners increase the probability of developing AIDS."⁷

Budget considerations played a major role in the federal government's response to AIDS. These budgetary decisions were politically as well as economically motivated. The Reagan administration aligned quite clearly with religious, conservative groups such as the Moral Majority. Had this epidemic affected nonstigmatized citizens, it no doubt would have been fought with greater resources and less government denial.⁸

The response of the medical community was also ineffective. The United States spends more money on health care but gets fewer results in good overall health statistics than any industrialized country.⁹ Its health-care system is characterized by fragmented services, poor leadership, and a complacent public. AIDS came along at a time of high inflation and massive federal cutbacks in health care services. With reduced revenues, hospitals had a hard time dealing with the surge of AIDS patients that began knocking on their doors in the mid-1980s.

Part of this problem is institutional. American medicine's emphasis on treatment over prevention has made hospitals the major focus of our health care system. Because controlling costs is the chief goal of health policy and treating AIDS patients is costly, it is not surprising that the response to this epidemic was inadequate. Some hospitals with special "AIDS units" experienced a mass defection of non-AIDS patients, who went elsewhere. For other hospitals that admitted large numbers of AIDS patients, the resulting shortage of beds meant jammed emergency rooms and long waiting periods.

This inefficiency had an economic effect on the entire community. Many business owners, for example, pointed to the lack of hospital bed space as a reason for moving their companies to other cities, thereby reducing the number of jobs available in the area.

In addition, the process of reviewing and publishing medical research in the most prestigious scholarly journals may have also delayed public acknowledgment of the seriousness of the epidemic. These journals are the primary means by which information is disseminated in the medical community and the primary means by which individual researchers can enhance their reputations. The process of reviewing, revising, and publishing, however, can take up to a year, and virtually all journals have an iron-clad rule about the secrecy of material that is being considered for publication: If there is any leak whatsoever to the popular press about the research prior to publication, the journal will not publish the article.¹⁰

These operating procedures delayed the publication of information about AIDS. The first article on the disease appeared in June 1981 in the Morbidity and Mortality Weekly Report, a newsletter published by the Centers for Disease Control (CDC) that is far less prestigious but has a much shorter publication time than the top journals. Even when the article was published, the CDC dropped all references to homosexuality from the title and placed the article inconspicuously on the second page of the report, not wanting to offend homosexuals or inflame prejudice against them.¹¹

The many organizations that constitute the nation's blood industry were also slow to respond. No national program for testing blood or screening blood donors existed until several years after the epidemic began. However, as early as July 1982, the CDC warned the blood industry of its suspicion that the disease was transmitted through blood and asked that blood banks not accept blood from high-risk groups. It also recommended that the Public Health Service test all blood.

The gay community strongly opposed screening for high-risk groups on civil rights grounds and for fear of further discrimination against gays. The blood industry, protecting its own reputation, continued to deny any danger.¹² As late as 1984, the Red Cross refused to acknowledge that AIDS could be transmitted through blood transfusions.

Blood banks finally began screening the blood supply in March 1985. However, it wasn't until July of that year that they bothered notifying the donors that they were infected. Many people continued to pass on the virus unknowingly to others. By 1989 several thousand cases of AIDS due to blood transfusion had been reported, and hundreds of lawsuits had been filed against the blood banks.

The National Hemophilia Foundation also found that AIDS blood screening conflicted with its goals and weakened its ability to do its job. A blood-clotting product made of donated blood was increasing the life span of many hemophiliacs to near normal up until 1985, when blood screening for AIDS was finally in place. But because of the earlier lack of screening, hemophiliacs who had received blood transfusions prior to 1985 had an infection rate between 65% and 95%.¹³

In sum, the AIDS crisis is tied to organizational and institutional failure. Governments at the federal, state, and local level failed to fund education and research, the research community failed to respond quickly enough, the health care system failed to respond effectively enough, and the blood industry failed to ensure the safety of their product. To make matters worse, organizations replicated each other's ineffectiveness and inaction. The sad conclusion is that the magnitude and seriousness of the epidemic could have been avoided had the organizational response been different.

¹Shilts, R. M. 1987. And the band played on: Politics, people and the AIDS epidemic. New York: St. Martin's Press.

²Shilts, R. M. 1987. And the band played on: Politics, people and the AIDS epidemic. New York: St. Martin's Press.

³Eitzen, D. S., & Baca-Zinn, M. 1989. Social problems. Boston: Allyn & Bacon.

⁴Fee, E., & Fox, D. M. 1992. AIDS: The making of a chronic disease. Berkeley: University of California Press. Shilts, R. M. 1987. And the band played on: Politics, people and the AIDS epidemic. New York: St. Martin's Press.

⁵Perrow, C., & Guillen, M. 1990. The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press.

⁶Perrow, C., & Guillen, M. 1990. The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press.

⁷Shilts, R. M. 1987. And the band played on: Politics, people and the AIDS epidemic. New York: St. Martin's Press. p. 242.

⁸Perrow, C., & Guillen, M. 1990. The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press.

⁹Perrow, C., & Guillen, M. 1990. The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press.

¹⁰Shilts, R. M. 1987. And the band played on: Politics, people and the AIDS epidemic. New York: St. Martin's Press.

¹¹Shilts, R. M. 1987. And the band played on: Politics, people and the AIDS epidemic. New York: St. Martin's Press.

¹²Perrow, C., & Guillen, M. 1990. The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press.

¹³Perrow, C., & Guillen, M. 1990. The AIDS disaster: The failure of organizations in New York and the nation. New Haven, CT: Yale University Press.

David Newman and Rebecca Smith. (Created October 7, 1999). Copyright Pine Forge Press.
http://www.pineforge.com/newman.