Every decision you made you thought about confidentiality because people were losing their jobs, their houses, their health care.
first director of AIDS programs for the Department of Health in Washington, DC1
From the beginning of the Ryan White HIV/AIDS Program, Title I (now Part A) Planning Councils were required to include among their membership a person living with HIV, but finding a member to identify as HIV positive was not always easy. Health Resources and Services Administration (HRSA) HIV/AIDS Bureau (HAB) Project Officer Sheila McCarthy recalls attending one local Planning Council meeting in the Program’s early years in which each person on the council put a “+” or “−” on a blank piece of paper to indicate whether they were HIV positive or negative and then put the paper in a bowl. With at least one + in the bowl, the council could document that it had a member who was living with HIV, but no one knew who that person was.2
Disclosure of one’s status as a person living with AIDS and, later, HIV has been an issue from the earliest days of the epidemic, and the desire to protect the confidentiality of HIV status has had a profound impact on the Nation’s response to HIV/AIDS, including the Ryan White HIV/AIDS Program. For the Ryan White HIV/AIDS Program, confidentiality concerns have affected the types of testing programs supported; shaped the data that HAB collects about who is accessing funded services and how; and affected how HIV/AIDS cases are reported to the U.S. Centers for Disease Control and Prevention (CDC), which in turn drives Ryan White HIV/AIDS Program funding formulas.
The privacy of all medical information is deeply rooted in history and tradition, going back to the Hippocratic Oath: “Whatever I see or hear in the lives of my patients, whether in connection with my professional practice or not, which ought not to be spoken of outside, I will keep secret, as considering all such things to be private.”3 Such privacy has been extremely important for people living with HIV/AIDS (PLWHA), many of whom have faced stigma, discrimination, and hostility from the earliest days of the epidemic. Fears of disclosure remain today.
Given many of the reactions that PLWHA have faced since the beginning of the epidemic, such fears are of no surprise. As noted in the Institute of Medicine’s (IOM’s) landmark 1986 report Confronting AIDS, “the stigma associated with AIDS has led to instances of discrimination in employment, housing, and access to social services.”4 The 1988 update of the report stated that “numerous anecdotal accounts portray the difficulties faced by persons with AIDS or even by persons who are members of a risk group. A number of court cases have been filed involving victims of AIDS-related discrimination in a variety of settings . . . . and complaints have been docketed with State and local human rights commissions.”5
Since the beginning of the epidemic in the United States, HIV/AIDS has disproportionately affected populations that already experience discrimination, including gay men; members of racial and ethnic minority groups; and those who engage in certain illegal behaviors, such as illicit drug use and sex work. The stigma faced by PLWHA is rooted in the stigma faced by these populations as well as reactions to the disease itself. As an incurable, progressive illness, AIDS forced people to confront issues of death, and because it is transmissible, people with the disease are sometimes perceived as putting others at risk and even blamed for becoming infected as result of their own behaviors. As an early research team noted,
The stigma attached to AIDS as an illness is layered upon preexisting stigma. The result is that as public perceptions of AIDS become inextricably tied to perceptions of the groups among which it is most prevalent, the stigma of disease and death become attached to the groups themselves. AIDS has become a symbol: Reactions to AIDS are reactions to gay men, drug users, racial minorities, or outsiders in general.6
The early experiences of Frank Oldham bear out these conclusions. Now president and CEO of the National Association of People With AIDS, Oldham lived in New York City’s Chelsea neighborhood and worked at the New York City Department of Health and Mental Hygiene in the 1980s. He recalls an atmosphere during that period akin to a witch hunt in which any gay man who was thin was suspected of being ill. “The general public did not understand HIV transmission; there was a huge fear of people living with AIDS and a fear of gay men.” As one example of these fears and their impact, Oldham remembers a sick colleague in the health department who tried to hide his physical wasting as long as possible by doubling up on his clothes. Other employees went to their supervisors saying that they did not want to sit next to him and, later, that they did not want him working in the office at all.7