Shoulders To Stand On EC March Issue 2017
The Long Road To Wellness (cont’d)
Last month we looked at AIDS curriculum in Monroe County, expansion of rehabilitative treatment for IV drug abuse and the beginning conversations on needle exchange programs, and the recognition that AIDS had spread into the heterosexual community. It seems historically, that 1988 was a pivotal year on many fronts of the Road To Wellness. HIV-AIDS work culminated in 1988 in increased awareness including the dissemination of Surgeon General C. Everett Koop’s Report on AIDs in America and federal legislation, and the accomplishments of the AIDS Institute in New York State. Both of these had a “trickle down” effect in Rochester to be felt in subsequent years.
Awareness is a complicated aspect of the AIDS Epidemic. By 1988 there were many avenues of communication being used – doctors, school curriculums, public health warnings, the radio, television, and to some extent the internet. Early AIDs organizations, the NYS Health Department, the NYS AIDS Institute, and the Rochester Area Task Force on AIDS were all trying to stay ahead of the curve in trying to deal with the fear, confusion, mistrust of governmental systems, and shear denial. One of the key components of awareness however, is the willingness and ability to hear. In 1988 the first treatments for AIDS were available, concrete knowledge about the disease, its causes and how it was transmitted from person to person were known but with many fears and inaccuracies attached to the information by those communicating it. That is one reason why in May, 1988 the Surgeon General of the United states C. Everett Koop mailed a congressionally-mandated eight-page, condensed version of his 1986 Surgeon General’s Report on Acquired Immune Deficiency Syndrome report named Understanding AIDS to all 107,000,000 households in the United States, becoming the first federal authority to provide explicit advice to US citizens on how to protect themselves from AIDS.
Prior to this mailing 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.
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. Koop pointed out to conservatives reluctant to address AIDS, science and traditional morality reinforced one another in the prevention of AIDS. 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.
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.” 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.
In his papers, Koop 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.
Koop has been viewed in the light of the Reagan Administration. In the course of doing research on this article, your author has come to recognize the contribution C. Everett Koop made in the awareness of AIDS to the citizens of the united States including those in Rochester, NY. Shoulders To Stand On is proud of the down to earth, straightforward talk C. Everett Koop gave New Yorkers and the world. Next month we will look at legislative action and the role of New York’s AIDS Institute.