Promotional material for the 2022 National Black HIV/AIDS Awareness Day. Source: Congressional Equality Caucus. By Aishah Scott
Since 1999, February 7th has been observed as National Black HIV/AIDS Awareness Day (NBHAAD) in the United States to acknowledge the continuous disproportionate impact of the epidemic on the Black community. As we reflect on the recent 25th annual NBHAAD, Black Americans still account for nearly half of new diagnoses, while making up only a fraction of those prescribed pre-exposure prophylaxis (PrEP).[1] PrEP is a prescription medication that protects against HIV infection. It reduces the risk of HIV infection from sexual transmission by 99% and injection drug use by 74%. Despite the incredible effectiveness of PrEP as a tool in the fight against HIV/AIDS, in 2021 just 11% of those eligible for PrEP in the Black community received a prescription. Alternatively, 78% of their white counterparts were given PrEP. This disparity speaks to the ongoing medical racism and systemic barriers to care and resources that plague the Black community since the onset of the HIV/AIDS epidemic in the 1980s.
In 1995, the AIDS cocktail, Highly Active Antiretroviral Therapy (HAART) literally brought persons living with AIDS back from the brink of death. One woman, Beth Bye, said she “returned from the dead”; she had already made funeral arrangements and was preparing to transition into hospice care when HAART saved her life in spring 1996. The introduction of HAART gave people living with AIDS another chance at life. However, Black Americans were getting diagnosed later and dying faster than their white counterparts. Studies showed that significantly more Black Americans were getting initial HIV diagnoses in inpatient hospital care when they were already at later stages of the disease. Black people were often getting diagnosed after they were symptomatic which signified the disease’s progression as opposed to early intervention from routine medical care. PrEP is just the most recent example of systemic delays in access to HIV/AIDS information and care. Disparities with distribution of PrEP evidence that we cannot close racial disparities in HIV/AIDS through innovations in medicine without also breaking down the structural barriers of accessibility.
In the words of the former vice president of AIDS United, Dr. Vignetta Charles, “Housing is HIV Prevention,” and an example of structural inequality that leaves Black American health in a state of perpetual vulnerability.[2] Disproportionate poverty in Black Communities creates structural barriers to equality in housing, education, employment and healthcare. “Incidence, hospitalizations rates, and mortality were highest among Black/African American and Hispanic/Latino persons, as well as those who were living in neighborhoods with high poverty.” This is from a COVID-19 CDC report, but strikingly similar language can be found in HIV/AIDS CDC reports from the late 1980s to 2018. The reality dishearteningly remains that Black Americans are more likely to die from ALL causes. HIV/AIDS is a vehicle, a placeholder of sorts, for understanding the ways in which respectability politics have been used to systemically racialize socioeconomic disparities that inherently leave the African American community vulnerable. A vulnerability that is being highlighted again today with the COVID-19 pandemic. This vulnerability by intentional avoidance of systemic root causes (access to affordable housing, employment, quality education and healthcare) is purposeful and historical.
This micro-syllabus explores how the marginalization of Black Americans led to the disproportionate growth of the AIDS epidemic in this community. It highlights works that analyze the specific intersections of gender, religion, and sexuality that perpetuated the marginalization of Black Americans in the realm of public health as well as the myriad of social and economic factors that have ultimately left this group vulnerable to HIV infections and AIDS. On a broader level, the micro syllabus explores how the disproportionate manifestation of the AIDS epidemic in the Black American community speaks to larger systemic disparities in healthcare, employment, housing, and income. It also draws connections to the systemic issues that continue to allow Black Americans to be disproportionately impacted by the current COVID-19 pandemic.
Primary
Kadaba, Lini. “The Black Warning.” The Philadelphia Inquirer Magazine, July 8, 1990, 12-17.
This primary source details what led renowned HIV/AIDS advocate and infectious disease nurse Rashidah Abdul-Khabeer (formerly Hassan) to co-found Black Educating Blacks about Sexual Health Issues (BEBASHI) in Philadelphia. Abdul-Khabeer described resistance to her early outreach efforts in the mid-1980s from two main sources: gay white men and Black people. She left her job as an infectious control practitioner at Albert Einstein Medical Center in1986 due to a significant number of Black AIDS patients in her unit, statistics revealing Black Americans indeed developed AIDS more often than whites, and literature she received as a medical professional that still maintained that HIV/AIDS was a gay white man’s disease. She took a position working with the Philadelphia Health Department’s AIDS unit as an infection control nurse epidemiologist and was appointed to the board of HIV/AIDS advocate group Philadelphia Community Health Alternatives (PCHA). Ultimately, she discovered that PCHA was also lacking in addressing the HIV/AIDS epidemic in the Black community and founded BEBASHI. The organization went from a grassroots non-profit managed from Abdul-Khabeer’s kitchen table to a million-dollar operation in four years.
Laura Randolph, “The Hidden Fear: Black Women, Bisexuals, and the AIDS Risk,” Ebony, January 1988.
In this source Randolph claimed that secretly bisexual Black men were putting Black women at risk for contracting HIV and accounted for their increased heterosexual infection rates. Randolph’s article conflated homosexuality and bisexuality with deceitful duplicitous behavior. She presumed that every gay Black man who admitted to dating women before coming out likely had sex with both genders concurrently. Though statistics from 1988 suggest that most women who contracted HIV/AIDS from heterosexual transmission engaged in intercourse with intravenous drug users, there was growing paranoia in the Black community that bisexual Black men were the real threat. Randolph’s article perpetuated a narrative that gave black women and the larger black community an easier scapegoat than IDUs, bisexual Black men.
Maral Noshad Sharifi, “The Men Who Want AIDS—and How It Improved Their Lives.” Out. August 8, 2013. http://www.out.com/news-opinion/2013/08/02/men-who-want-aids-bronx-new-york
This interview with Tye Fortner details a young Black man living with AIDS who sabotaged his health to gain access to housing and resource services. At the age of sixteen Fortner became a sex worker, by the time he was twenty-two, he was addicted to crack cocaine, homeless, and HIV positive. Fortner found out that once HIV reached advanced stages, he would be eligible for aid from New York City’s HIV/AIDS Services Administration (HASA). HASA provides housing assistance, financial aid, access to free medical care, and other supportive services. In order to secure an apartment for the first time in his adult life, Fortner took matters into his own hands. He began sabotaging his health to qualify for additional benefits.
Secondary
Cohen, Cathy J. The Boundaries of Blackness: AIDS and the Breakdown of Black Politics. University of Chicago Press, Chicago, 1999.
Political Scientist, Cathy Cohen’s work tackles HIV/AIDS in the Black American community in terms of cross-cutting versus consensus issues, where cross-cutting issues like HIV/AIDS caused a second marginalization in an already marginalized community. Cohen argues that the Black community viewed HIV/AIDS as a cross-cutting issue that affected a “deviant” subset of the larger African American community therefore felt less of need to mobilize a collective response. Her work delineates the limitations of these community fracture on Black politics to be inclusive of those with failed to meet the standard of respectability.
Hammonds, Evelynn M. “Race, Sex AIDS: The Construction of ‘Other,’” Radical America 20.6 (Nov.-Dec. 1987). 28-38.
Historian, Evelynn Hammonds penned one of the earliest works that identified the limitations of the internal respectability politics at play among Black Americans regarding the AIDS epidemic. She stated the biggest disappointment of the Black media’s depictions of the epidemic was that by “focusing on individual behavior…as ‘bad,’ the national black media falls into the trap of reproducing exactly how white society has defined the issue.” Hammonds also discusses how mainstream media adopted practices of color-blindness as a sign of progress that resulted in failure to develop resources tailored to the needs of the Black community.
Harris, Angelique. AIDS, Sexuality, and the Black Church: Making the Wounded Whole. Peter Lang, 2010.
Sociologist, Angelique Harris focuses on the response of the Black Church to the epidemic by analyzing the New York based grassroots organization Balm in Gilead in her work. This work reinforces the importance of the Black Church as the oldest influential institution in the community often the central space for social and political organizing. Harris argues that Balm in Gilead redefined how the Black Church understood AIDS and that the Black Church was not silent in response to the epidemic.
Watkins-Hayes, Celeste. Remaking a Life: How Women Living with HIV/AIDS Confront Inequality. Oakland, CA: University of California Press, 2019.
Sociologist, Celeste Watkins-Hayes draws on her “Health, Hardship, and Renewal Study” to examine how women remake their lives living with HIV/AIDS even while navigating complex networks of inequalities. She takes a deep dive on the impact of HIV safety net support systems in helping these women overcome many of the systemic inequalities hat left them vulnerable to HIV infection in the first place.
Levenson, Jacob. The Secret Epidemic: The Story of AIDS and Black America. Pantheon Books, 2004.
Jacob Levenson’s work excavates the perspectives of various actors in the epidemic through a compilation of case studies. His work gave a voice to the direct experiences of Black people living with HIV/AIDS in rural and inner-city communities (across lines of class and sexuality), Black researchers and advocates, as well as white allies. Levenson’s book does an excellent job of showcasing how racial inequalities in housing, education, employment, and healthcare couple with divestment in social welfare infrastructure for disastrous results in lived experiences of Black people. His accessible and vivid writing style resonates well with students making this work a good teaching tool.
Royles, Dan. To Make the Wounded Whole the African American Struggle against HIV/AIDS. Chapel Hill, NC: University of North Carolina Press, 2020.
Historian, Dan Royles examines the diversity of grassroots Black AIDS activism (domestic and global) from the 1980s to 2000s. He explores how activists elevate marginalized Black voices and push against the erasure of the disproportionate impact of the epidemic on Black people by government institutions, private granting agencies, and AIDS service organizations.
[1] Black Americans accounted for 40 percent of new HIV diagnosis in 2021. “HIV Diagnoses,” Centers for Disease Control and Prevention, June 26, 2023, https://www.cdc.gov/hiv/group/racialethnic/other-races/diagnoses.html.
[2] Vignetta Charles. “United AIDS.” Interview by author. February 26, 2015.
AUTHOR BIO
Dr. Aishah Scott is a joint appointed Assistant Professor of Black Studies and Health Sciences at Providence College where she is working on her book manuscript entitled, Respectability Can’t Save You: The AIDS Epidemic in Urban Black America. This work focuses on the impact of the HIV/AIDS epidemic in the African American community and the role of “respectability politics,” or moral policing, on state and community leaders from 1980-2010. She is an advocate for social justice and closing gaps in healthcare for underrepresented communities. Most recently, she published “Erased by Respectability: The Intersections of AIDS, Race, and Gender in Black America” in the Women, Gender, and Families of Color journal.