Many people who lived through the early days recall similar stories; PLWHA were losing their jobs; their homes; custody of their children; and relationships with family, friends, and faith communities. Many PLWHA felt like pariahs. Some were even shunned by health care professionals who were supposed to care for them, often left sitting in darkened hospital rooms with food trays placed just inside the door by workers who refused to enter. For many of those falling ill, it was not just fears of society’s reaction but also the reactions of family and friends that were of great concern and that led people to keep their illness private for as long as possible.
For many gay men, telling their families they had AIDS required that they simultaneously reveal their homosexuality. For others, disclosure meant acknowledging drug use or facing perceptions of sexual promiscuity. After the discovery of HIV as the cause of AIDS and the development of the test for HIV antibodies, a few journalists in prominent publications were even calling for massive testing campaigns and tattooing or quarantining PLWHA. In 1987 alone, the National Gay and Lesbian Task Force received more than 1,000 reports of harassment of gay people that involved references to AIDS.8
Providers at the Brooklyn Hospital Center’s Program for AIDS Treatment and Health (PATH) discuss a patient’s file confidentially.
Some of the most visible cases of discrimination and violence in the first decade were among those who were hemophiliacs, not members of highly stigmatized communities. Although not blamed for their illness, hemophiliacs still suffered the brutal effects of stigma. The family home of the young Ray brothers in Florida was burned after a judge ordered the local school to welcome them back and, of course, Ryan White himself fought his own court battle to attend school because of the misguided fears of school administrators and parents. Ryan White’s courageous public battle against AIDS-discrimination was nothing short of inspiring; it’s because of this he is the namesake of the Ryan White HIV/AIDS Program itself. Although these stories were perhaps the most visible, there were countless others.
Given the enduring nature of these prejudices and the fundamentally intimate nature of the information often related to an AIDS or HIV diagnosis, it is not surprising that many people did not want their HIV status disclosed publicly without their consent, especially in the earliest days of the disease. In the midst of all these fears and emotions, it is easy to understand why confidentiality of information and disclosure of AIDS and, later, HIV status were such pressing concerns.
As PLWHA organized with a collective voice early in the epidemic, they declared their right to “ensure privacy and confidentiality of medical records” in the Denver Principles, which were drafted in 1983 as the foundation of the PLWHA empowerment movement. Despite privacy concerns, moves to make AIDS notifiable to public health authorities rarely produced sustained protest. The CDC, however, was unsuccessful in its efforts to create a national list of reported names. With the development of the HIV antibody test, the landscape changed as AIDS advocates, civil liberties groups, and gay rights organizations fought efforts to create name-based HIV-reporting systems and sought to strengthen protections for HIV-related information.
Efforts to prevent name-based reporting were driven by concerns, often shared by public health officials, that such programs and the fears of breaches of confidentiality and the repercussions of being on a list of PLWHA would prevent people at risk of infection from being tested. Fear of discrimination was compounded by fears related to being on a list that might be associated with criminal behavior, including drug use and sodomy. At the time, sodomy laws in many States still criminalized the sexual behavior of gay men.
The opposition to name-based HIV reporting was in no way outside the mainstream. In its 2000 report The Role of Name-Based Notification in Public Health and HIV Surveillance, the World Health Organization wrote: “HIV [name reporting] is a more sensitive issue owing to the potentially harmful social and economic consequences that may arise from breaches of confidentiality. Thus, wherever possible, reports to public health authorities should be made without any personal identifiers.”9