By: David Martins, APRI Program Director
It started as whispers—stories of young, otherwise healthy men getting sick with infections that doctors had rarely seen before. The medical community scrambled for answers, but the disease remained an enigma. Then came the headlines, spreading as fast as the virus itself, turning fear into stigma and isolation. It was a time of uncertainty, of loss, of desperation. People were dying, and no one seemed to know why.
In June 1981, the Centers for Disease Control and Prevention (CDC) documented the first known cases of AIDS in the United States—five young gay men in Los Angeles, all suffering from a similar rare pneumonia. The same day that this story was released, a dermatologist in New York City called the CDC to report the discovery of a rare and aggressive cancer, Kaposi’s Sarcoma, among a small group of young gay men. By the end of that year, there would be 337 cases in the United States, with 130 deaths.
Despite our proximity to larger cities like Boston and New York, the first confirmed cases of AIDS did not arrive in Rhode Island until 1983. As numbers climbed, so did the anxiety. Calls to the Rhode Island Department of Health surged as residents demanded answers. But at the time, even doctors and public health officials had little understanding of the disease, leaving communities desperate for information and resources.
Initially called “Gay Related Immune Deficiency” (GRID), many believed this to only be a gay issue. Misinformation thrived, fueled by fear and prejudice. The early association of AIDS with intravenous drug use and homosexuality led many to distance themselves from the crisis, creating a culture where simply talking about AIDS was seen as incriminating. For those living with or at risk of contracting the virus, this silence was deadly. Without widespread education and awareness, Rhode Islanders lacked the knowledge to protect themselves or seek testing and care.
Meanwhile, the epidemic escalated across the country. By 1989, AIDS had become the second leading cause of death among men aged 25 to 44 in the United States. By 1990, more than 100,000 Americans had died from complications related to AIDS. Those affected faced profound discrimination—hospitals reluctant to treat patients, families abandoning loved ones, funeral homes refusing services. The crisis demanded action, and when institutions failed, communities stepped up.
Grassroots organizations emerged as lifelines, offering care, education, and advocacy. Volunteers became caregivers, stepping in where the government and healthcare system would not. In Rhode Island, we enjoyed the benefit of the beginnings of an LGBT community that had already united around pride marches and the liberation movement of the 1960s and 70s. Small groups of friends came together for potlucks to strategize about how to best care for their dying loved ones. In May of 1985, one of those potlucks became the first meeting of “The Rhode Island Project/AIDS.”
The past four decades have seen remarkable progress. The introduction of antiretroviral therapy (ART) in the mid-1990s transformed HIV from a fatal diagnosis into a manageable chronic condition. Today, 1.2 million people in the United States are living with HIV, and annual new infections have dropped to about 31,800. Pre-exposure prophylaxis (PrEP) has provided an additional layer of protection, offering near-total prevention when taken consistently.
Despite these advancements, the fight is far from over. In Rhode Island, 2796 people are living with HIV. When we consider those living with HIV or not yet diagnosed, that number climbs to over 3,000. Disparities in care also persist. Black, Latino, and LGBTQ+ communities continue to experience higher rates of new infections, often due to systemic barriers in healthcare access. Misinformation and stigma still discourage many from seeking testing or treatment, and funding for HIV/AIDS programs remains precarious.
We have the tools to bring new infections to zero. We know how to prevent the spread of HIV, and we know how to ensure that those living with the virus receive the care they need to lead full, healthy lives. But knowledge alone is not enough. Continued funding is critical to expanding awareness, improving access to prevention, and ensuring that every person—regardless of race, gender, or socioeconomic status—has the resources to live without the burden of stigma and fear. The next phase of this fight isn’t just about treatment—it’s about elimination. If we commit the necessary resources now, we can write the final chapter in the history of HIV.
