AIDS, the Surgeon General, and the Politics of Public Health

C. Everett Koop's two terms as U.S. Surgeon General coincided with the rise of the AIDS epidemic in the United States, an epidemic that, scientists and health officials predicted, would turn into the greatest public health catastrophe of the twentieth century. After his superiors relegated him to the sidelines of the AIDS debate during his first four years in office, Koop dedicated almost all of his time and energy to the disease in his second term. In 1986, he was finally authorized to issue a Surgeon General's report on AIDS. In 1988, he mailed a congressionally-mandated information brochure on AIDS to every American household. As he recollected, during this period "AIDS took over my life." Through his report and his many speeches and interviews on AIDS Koop did more than any other public official to shift the terms of the public debate over AIDS from the moral politics of homosexuality, sexual promiscuity, and intravenous drug use, practices through which AIDS was spread, to concern with the medical care, economic position, and civil rights of AIDS sufferers. Similarly, Koop promoted redefining the prevalent scientific model of the disease, from a contagion akin to bubonic plague, yellow fever, and other deadly historic epidemics that required the strongest public health measures--mandatory testing and quarantine of carriers--to a chronic disease that was amenable to long-term management with drugs and behavioral changes.

During the height of Koop's nomination battle, in June 1981, the Centers for Disease Control (CDC) reported five cases of homosexual men in Los Angeles who were dying from Pneumocystis carinii pneumonia, a rare form of pneumonia most often contracted by people with weakened immune systems. A month later, the CDC reported on twenty-six young homosexual men recently diagnosed with Kaposi's sarcoma, an equally rare skin cancer. During his forty-year career as a surgeon Koop had seen two cases of Kaposi's sarcoma; twenty-six cases in a single report, he realized, were the makings of an epidemic disease, a disease that was destroying the immune system of otherwise healthy adults, who then succumbed to other, opportunistic diseases. The disease, which in 1983 was named Acquired Immune Deficiency Syndrome, or AIDS, was traced the same year by French and American scientists to a virus, the Human Immunodeficiency Virus (HIV). Researchers discovered the means by which AIDS was spread, namely through sexual intercourse, the sharing of contaminated needles among intravenous drug users, transfusion of infected blood, and transmission from pregnant mother to child in utero, during birth, or during nursing. A blood test to detect antibodies to HIV and a technique for killing the virus in blood products were developed in 1985, making the blood supply once again safe for transfusion, and clotting factors safe for hemophiliacs. Yet, also by 1985, nearly 12,000 cases of AIDS had been reported in the United States, and just under 6,000 of those infected had died. One of those who died that summer was movie star Rock Hudson, a friend of President Ronald Reagan whose death drew nationwide attention to the epidemic.

With no cure and no vaccine, educating the public on how AIDS was transmitted, who was at risk, and how to protect oneself was the only way left to slow the spread of the disease. Since this task fell under the mandate of his office, Koop concluded that "if ever there was a disease made for a Surgeon General, it was AIDS." Nevertheless, for the first four years in office, the nation's top health officer was prevented from addressing the nation's most urgent health crisis, for reasons he insisted were never fully clear to him but that were no doubt political. During the early years of the epidemic, AIDS predominantly affected people--homosexuals and intravenous drug users--who, in the view of President Reagan and his domestic policy advisers, brought the disease upon themselves by engaging in immoral conduct, and who were in greater need of moral reform than of new health information or policies. For two years, Koop was excluded from the Executive Task Force on AIDS established in 1983 by his immediate superior, Assistant Secretary of Health Edward Brandt. Journalists received instructions from Brandt's office in advance of press conferences that the Surgeon General would not answer questions about AIDS, and that he was not to be asked about it. Meanwhile, as AIDS claimed a growing number of lives and the Reagan administration sponsored research but otherwise remained silent on the disease, Americans worried about the possibility of contagion through casual contact in schools, restaurants, and public lavatories; politicians called for the mandatory testing of the entire population and the quarantine of AIDS patients; and AIDS activists, represented by homosexual organizations formed during the gay-rights movement of the 1970s, complained that the conservative Reagan administration was ignoring the epidemic for political reasons.

Finally, in February 1986, nearly five years after the outbreak of the epidemic, President Reagan instructed his Surgeon General to prepare a report on AIDS. Koop went to work with dispatch. During the next several months he met with numerous groups and experts involved in the fight against AIDS, from the National Hemophilia Foundation to the National Coalition of Black Lesbians and Gays, from Christian fundamentalists to scientists such as Dr. Anthony Fauci, leader of AIDS research at the National Institutes of Health (NIH), to AIDS patients themselves whom he visited in hospitals around Washington, D.C. Throughout he remained careful to treat AIDS not as a moral but as a public health issue, and to preserve his independence from any of the groups he consulted--as well as from the White House. Koop drafted the report himself at a stand-up desk in the basement of his home on the NIH campus, with only a handful of trusted staff members as advisers, including Fauci. Concerned that an in-depth review by Reagan's domestic policy advisers would lead to the removal of crucial public health information from the report, such as on condom use, Koop submitted numbered copies of the final draft to the Domestic Policy Council, which he collected at the end of the meeting with the explanation that he sought to prevent leaks of the report to the media. The stratagem was successful: after little debate and without further revision Koop released the report at a press conference on October 22, 1986. Twenty million copies were eventually distributed to the public by members of Congress, public health organizations, and Parent-Teacher Associations. In plain language the 36-page report discussed the nature of AIDS, its modes of transmission, risk factors for contracting the disease, and ways in which people could protect themselves, including use of condoms. It projected that in 1991, 270,000 cases of AIDS would have occurred. The prediction was too pessimistic, as the total reported cases of AIDS in the U.S. through 1991 turned out to be 206,000, a measure of the effectiveness of Koop's AIDS education campaign. In his remarks Koop emphasized that since education was the best and only strategy of prevention against AIDS, and since AIDS was spread primarily through sex, school children from grade three onward should receive sex education.

Former liberal critics of Koop were pleasantly surprised while his erstwhile conservative supporters were taken aback by the explicit language and the lack of moral censure in his AIDS report, and above all by Koop's promotion of sex education in elementary schools. Yet, as Koop himself saw it, his approach to AIDS was consistent with his long-standing professional commitments as a pediatric surgeon, as well as with his religious faith: "My position on AIDS was dictated by scientific integrity and Christian compassion. . . . My whole career has been dedicated to prolonging lives, especially the lives of people who were weak and powerless, the disenfranchised who needed an advocate: newborns who needed surgery, handicapped children, unborn children, people with AIDS."

In his many speeches on AIDS over the next two years Koop emphasized that the best protection against the disease was provided by sexual abstinence and monogamy. As Koop often pointed out to conservatives reluctant to address AIDS, science and traditional morality reinforced one another in the prevention of AIDS. But he insisted that in order to stop the spread of the disease he had to dispense health advice to all Americans, including those who engaged in behavior that was in conflict with his personal moral values, namely extramarital, promiscuous, and homosexual sex, and drug use. He appealed to Americans to remain true to their ethic of care and compassion while decrying discrimination against AIDS carriers in the workplace, in schools, in housing, and in insurance policies. He argued for voluntary, confidential testing because it would encourage those at greatest risk to seek medical care, while mandatory testing would drive them underground, would produce many false positives, and would serve no purpose in the absence of a vaccine or cure. He considered quarantine of AIDS carriers unconstitutional and unnecessary from an epidemiological standpoint. Finally, Koop drew attention to the plight of the growing number of children who had acquired AIDS from their mothers or through blood transfusions, as well as to the effect their disease had on their families, the subject of a workshop the Surgeon General convened in April 1987.

In May of 1988, Koop sent an eight-page, condensed version of his AIDS report to all 107,000,000 households in the United States, the largest mailing in American history and the first time that the federal government provided explicit sex information to the public. His report, speeches, and television appearances did much to change the public debate on AIDS in the United States and, along with it, attitudes towards public discussion of sexuality. In April of 1988, the first condom ad appeared on national television. By then, analogies between AIDS and the great epidemic scourges of the past were heard less often; so were calls for mandatory testing and quarantine of AIDS carriers, the most rigorous public health measures employed during past epidemics. Instead, following the lead of the Surgeon General, physicians, government officials, politicians, and the public were coming to view AIDS as a preventable and manageable disease, even if it was not curable. With the advent of AZT (zidovudine, formerly called azidothymidine) in 1986, and especially with the development of a more effective combination of antiretroviral drugs in the mid-1990s, AIDS in the United States changed from an epidemic to a chronic disease, with the focus as much on the long-term medical care and medical costs, employment opportunities, and civil rights of AIDS patients as on AIDS education and prevention.