By Maryann Makosiej
“Rare cancer seen in 41 homosexuals,” one headline screamed.
“New homosexual disorder worries health officials,” another warned.
It was 1982 and the best way to silence a voice is to pretend like none have come before it. Journalists, scientists, and politicians alike all struggled to grapple with a seemingly mysterious immune-related wasting disease.
Spread primarily through sexual contact or contact with infected blood, Human Immunodeficiency Virus (HIV) is a virus that acts the body’s own immune system. Over time, it can progress to Acquired Immunodeficiency Virus (AIDS).
In this month’s theme of plagues and epidemics, the history of HIV and AIDS remains a controversial one. Real hesitancy to report on the disease cost thousands of lives. The legacy of medical mistrust lives on in the marginalized communities where the rates of HIV and AIDS remain the highest. Choosing not to report on something does not mean it does not exist. For the health of all in our communities, we must do better in the next epidemic.
Fear and mistrust governed the earliest days of HIV/AIDS. In the early 1980s, the epidemic began in primarily young, white, middle-class men who have sex with other men (Moore 2011). The fact that it was initially largely spread in the gay community and through sexual contact complicated efforts to have it acknowledged in the first place.
The disease received little if any attention from mainstream media or the public in its early years, a fact that the New York Times has acknowledged and apologized for (Soller 2018). When it was talked about, disparaging and nonfactual terms like “gay plague” were commonly used (Curran & Jaffe, 2011). The result? Severe mistrust in the health officials that were tasked with helping the impacted.
However, as the virus spread, so too did the diversity of those affected. By the mid 1980s, about 130,000 new infections were reported each year in the United States (Moore 2011). No longer relegated to specific segments of society, it was clear that HIV was a major public health concern.
Today, while rates of HIV infection are largely decreased, the burden of disease continues to disproportionately impact marginalized communities. The incidence of new HIV infection in the United States has largely stagnated since the 1990s. This is in part due to highly effective public health messaging on safe sex and cutting-edge anti-retroviral drugs that cuts down on the amount of virus that circulates in the body.
However, the exact prevalence of HIV infection remains unknown. About 55,000 people a year are diagnosed with a new infection but it is estimated that about 21% of total people living with HIV are unaware of their infection in the United States (Moore 2011). HIV prevalence among Black persons in the United States is almost eight times higher than among White persons (Moore 2011).
Compared to White women, Black women are diagnosed with a new HIV infection at a rate of 14x higher (Moore 2011). Identifying and providing resources to communities where HIV infection is likely under-diagnosed is essential to the continued effort of reducing infection rates. So too is continued international cooperation.
37.7 million people around the world live with HIV, with the vast majority living in low- and middle-income countries (Avert 2021), nations without access or acceptance of safe sex messaging nor anti-retroviral treatment. HIV infections will continue as long as they remain this prevalent, with the ability to mutate and disrespect international borders.
The epidemic of HIV/AIDS continues in our communities. So too does the impact of unclear reporting. As we move forward in advancing treatment of HIV and AIDS and addressing the social inequities that exacerbate unequal health outcomes, we must remember something greater than incidence rates or diagnoses.
Hear this: the victims impacted by HIV and AIDS are people too.
Hear this message from Merrill Singer, renowned medical anthropologist:
“Infectious diseases are never only biological in their nature, course, or impact. What they are and what they do are deeply entwined with human sociocultural systems, including the ways humans understand, organize and treat each other….Ultimately, in spite of our ingrained habit of treating them as distinct or even opposing forces, biology and culture are inseparable” (Singer 2015)
Science does not exist in a vacuum of research or just in the lab. In the granularity of research and reporting, we must remember our collective humanity.
Curran, J., & Jaffe, H. (2011). AIDS: the Early Years and CDC's Response. Retrieved 7 December 2021, from https://www.cdc.gov/mmwr/preview/mmwrhtml/su6004a11.htm
HIV and AIDS --- United States, 1981--2000. (2001). Retrieved 7 December 2021, from https://www.cdc.gov/mmwr/preview/mmwrhtml/mm5021a2.htm#tab1
Global HIV and AIDS statistics. (2021). Retrieved 14 December 2021, from https://www.avert.org/global-hiv-and-aids-statistics
Moore R. D. (2011). Epidemiology of HIV infection in the United States: implications for linkage to care. Clinical infectious diseases : an official publication of the Infectious Diseases Society of America, 52 Suppl 2(Suppl 2), S208–S213. https://doi.org/10.1093/cid/ciq044
Singer, M. (2015). Anthropology of Infectious Disease.
Soller, K. (2018). Six Times Journalists on the Paper’s History of Covering AIDS and Gay Issues (Published 2018). Retrieved 7 December 2021, from https://www.nytimes.com/2018/04/27/t-magazine/times-journalists-aids-gay-history.html