From the beginning of the epidemic, those most affected by HIV were among the most stigmatized populations in American society: gay men, injection drug users, and immigrants. The association of the disease with marginalized groups hindered the development of prevention and treatment strategies. AIDS was viewed by some as a deserved punishment for homosexuality and drug use, and as a foreign-borne menace to mainstream society. Growing panic stoked by a lack of information about the disease led some to advocate for quarantining and branding the ill. People with AIDS thus wrestled not only with the ravages of their illness but also with societal prejudices.
Activists endeavored to destigmatize HIV, challenging the perception that it was a moral punishment and insisting that the epidemic be addressed as a matter of public health. Rejecting their portrayal in the media as “victims,” those affected by the disease renamed themselves “People with AIDS” and “people living with HIV.” As such, they became active participants in their own treatment, and asserted their right to take part in any discussions that determined the trajectory of scientific research and the measures taken to protect public health.
Safer Sex and Needle Exchanges
Since HIV can be transmitted through sexual contact or the use of non-sterile injecting equipment, early prevention efforts were complicated by major cultural controversies in 20thcentury society, namely sexual liberation and the so-called War on Drugs. Many activists and experts counseled people at high risk to refrain from sexual contact or, at the least, to limit their partners. However, activists concerned with both saving lives and expanding sexual freedoms promoted guidelines for “Safer Sex” that supported sexual choices while reducing the risk of infection. Their efforts were met with resistance from both social conservatives concerned with a perceived acceptance of promiscuity and from those who rejected any restrictions at all on their sexual lives.
Halting the spread of HIV among people who inject drugs faced similar obstacles. Most states banned access to clean needles without a medical prescription as part of the War on Drugs, and organizations engaged in needle exchanges were denied federal funding. Activists across the country resisted these laws by operating illegal needle exchanges—acts of civil disobedience with the aim of saving lives. Many would later pioneer programs in cooperation with government agencies as needle-exchange programs became legal in many states.
AIDS activists strove to transform personal grief into a collective political voice while maintaining the dignity of people living with HIV. They feared that too great a focus on mourning could easily devolve into morbid sentimentality and voyeurism, and serve to deny the daily struggles and victories of people living with HIV.
Large-scale public memorials such as the 1983 candlelight vigil were among the earliest efforts by activists to honor those who had died and raise awareness of the crisis. Perhaps most famous of these commemorations is the AIDS Memorial Quilt, which memorializes the deceased with panels sewn by their loved ones. The red ribbon worn in AIDS remembrance is a similar project that references 19th-century customs of wearing ribbons during times of mourning. Although many activists have been critical of the sentimentality aroused by memorializing efforts, bold public rituals such as “die-in” demonstrations and political funerals have been used to galvanize a political response.
In the earliest years of the HIV epidemic, medical professionals were working in unexplored territory, and there was little useful information for people affected by the disease. People living with HIV created communities to exchange information and test potential treatments, both medically approved and alternative, as they became available. They also created an infrastructure of community-based organizations that provided essential care and services while demanding support for healthcare, research, and social services from national and local governments.
AIDS activists were impatient with the bureaucratic structure of the Food and Drug Administration (FDA), the National Institutes of Health (NIH), and pharmaceutical companies. Activists exerted pressure on both the federal government and private corporations to speed the testing and approval of medicines and to make the process more humane, respectful, and responsive to people living with HIV. Their work had a direct impact on accelerating the development of the combination therapies that have saved so many lives. These gains have had a tremendous influence beyond the HIV/AIDS crisis, fundamentally changing the political expectations and tactics of many other healthcare advocates.
The AIDS epidemic is far from over. In the United States, more than 600,000 people have died from the disease, and over one million others are living with HIV, many not knowing that they contracted the virus. HIV continues to disproportionately affect minority communities, people who inject drugs, the incarcerated, and transgender people, and new infections are at epidemic rates in poorer urban areas. Men who have sex with men, particularly those in the African American and Latino communities, followed by African American and Latina women, currently have the highest rates of HIV infection in the United States.
Worldwide, as many as 30 million people have died of AIDS, and more than 34 million are living with the virus, with over two million new infections annually. Despite scientific advances, most do not have access to treatment. The majority of cases are in sub-Saharan Africa, where one in every 20 people is now living with HIV. For women aged 15 to 44, AIDS is the leading cause of death worldwide. Both the World Health Organization (WHO) and the United Nations Programme on HIV/AIDS (UNAIDS) have asserted the need for prevention and treatment on a global scale, and insist that the response to HIV be grounded in human rights and gender equality. They have developed ambitious healthcare strategies for 2011–15 that aim to achieve universal access to HIV prevention, diagnosis, treatment, care, and support for all those in need.