Reflecting on 40 years since the first report of HIV

In June 1981, the Mortality and Morbidity Weekly Report by the Centers for Disease Control published an article that described cases of a rare lung disease in five young white men in Los Angeles who were previously healthy. A couple of months later, a New York City physician published a study of a cluster of Kaposi’s sarcoma in young men who did not fit the profile of the typical person diagnosed with the autoimmune condition. The World Health Organization (WHO) reported 36 cases of the unknown disease in Western Europe in 1981, mainly in France and Denmark. These were the first reports on what would become known as AIDS (acquired immune deficiency syndrome), though current research indicates that HIV (human immunodeficiency virus) was present on the African continent long before these reports.

The early years of the AIDS pandemic were marked by moral panic, shame and stigma which proved to be significant barriers to developing care and prevention. Community-led activism around the globe challenging the shame and discrimination that surrounded HIV/AIDS and fundamentally altered the relationship between the medical establishment and patients, the visibility and recognition of many social identities, and opened up new coalitions to promote prevention and empowerment. However, social class, citizenship, nationality, race, gender, sexual orientation continue to be significant factors in access to care. Dr. Cathy Cohen and Dr. Celeste Watkins-Hayes, for example, have written excellent books about the complexities of HIV in African American communities. The lesson of the AIDS pandemic, like COVID-19, is that we are in this together and unless we tackle the structural injustice that many communities face, we will have disparities in infection rates and care.

Since the start of the epidemic, around 78 million people have become infected with HIV and 39 million people have died of AIDS-related illnesses. According to UNAIDS, 37.6 people around the world were living with HIV in 2020. AIDS-related deaths have been reduced by 61% since the peak in 2004. Every week, around 5000 young women aged 15–24 years become infected with HIV. We still need education, anti-discrimination measures and tools for empowerment so that people have the ability to make safe decisions. Stigma and structural violence remain major barriers to prevention and care. Interventions must be culturally appropriate, based on science and rooted in the diversity of community. The battle is not over.