Suffering in Silence: African-Americans and the Modern HIV Epidemic

by David Marchionni

https://minorityaidssupport.org/ending-hiv-will-only-happen-if-black-america-leads/

It is difficult to escape the shadow of history. This is as true for disease as it is for people.  Take Yersinia Pestis, for example; centuries later it is still associated primarily with the Black Death of Medieval Europe.  Bubonic Plague seared itself into the West’s collective memory, yet the bacterium remains a very real concern for millions across the world. A 1994 mass outbreak in Surat, India forced hundreds of thousands to flee their homes, infected 693 residents, and caused 54 fatalities.1Godshen Pallipparambil, “The Surat Plague and Its Aftermath,” Montana State University, Accessed December 8, 2019, http://www.montana.edu/historybug/yersiniaessays/godshen.html. This same issue plagues the Human Immunodeficiency Virus (colloquially referred to by the acronym HIV). HIV has remained a highly stigmatized illness since the AIDS crisis of the 1980’s and has been inextricably linked to homosexual promiscuity in popular culture.  This connection has proven useful in some respects. For example, it fostered eventual support and funding for HIV-related aid programs in the metropolitan areas where much of the “Out” American LGBTQ Community resides. Yet, it has also proven highly detrimental to at-risk and HIV-positive populations who do not fit this traditional perception. HIV’s continued association with urban homosexual enclaves has proven particularly harmful to African-Americans living with HIV, especially within impoverished communities in the southern United States, which currently faces a veritable AIDS crisis of its own.

As the nation slowly confronted the AIDS epidemic between the late 1980’s and early 2000’s, a combination of governmental intervention, targeted prevention efforts, increased access to quality medical care and education, and more potent (and non-toxic) treatment options have markedly slowed down the rate of infection within the United States.2Thurka Sangaramoorthy and Joseph B. Richardson, “Why the South Still Has Such High HIV Rates,” The Conversation, June 29, 2019, http://theconversation.com/why-the-south-still-has-such-high-hiv-rates-76386. A welcome sign of such progress is the reported 19% drop in the number of new diagnoses between 2005 and 2014.3Thurka Sangaramoorthy and Joseph Richardson, “Why the South Still Has Such High HIV Rates,” http://theconversation.com/why-the-south-still-has-such-high-hiv-rates-76386. The Centers for Disease Control (CDC) estimates that there are approximately 1.1 million Americans currently living with HIV, and of that number, only 15% are currently unaware of their HIV-positive status.4Centers for Disease Control and Prevention, “U.S. Statistics,” HIV.gov, September 25, 2019, https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics. Unfortunately, these numbers mask a bleak reality. While it is certainly true that White America has experienced significant progress in the campaign against HIV/AIDS, this has not been mirrored in Black America. African-Americans account for the highest proportion of both new HIV diagnoses and of people living with HIV, encompassing more than any other American race or ethnicity. Currently, within the African-American community, the 2017 “Diagnoses of HIV Infection in the United States and Dependent Areas” CDC report noted that while African-Americans account for just 13% of the U.S. population, they comprise 42% of all new HIV diagnoses.5Centers for Disease Control and Prevention, HIV Surveillance Report, 2017; vol. 29, Published November 2018. Accessed December 22, 2019, http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html, p. 8. Breaking these numbers down slightly, 73% of diagnosed patients were men, while 26% were women. Beyond gender, it is apparent that sexual identity continues to be closely tied to HIV. Roughly 60% of newly diagnosed African-American men identified themselves as gay or bisexual, with male-to-male sexual contact remaining the primary vector of HIV transmission, with 80% of all new male infections occurring this way.  African-American women, on the other hand, primarily listed heterosexual sexual contact as their primary means of disease transmission, occurring in 91% of new female cases.6Centers for Disease Control and Prevention, “HIV and African Americans,” Centers for Disease Control and Prevention, Centers for Disease Control, November 12, 2019. https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html All told, there are approximately 468,800 African-Americans currently living with HIV.  Yet even with these statistics, it remains difficult to visualize the whole picture. The figures listed above reflect national averages; in so doing they fail to demonstrate where HIV transmission and mortality rates have grown the most prevalent (and the least treated): the American south.7Susan Reif, “State of HIV in the US Deep South,” HIV/AIDS Policy Clinic, Duke University, Accessed December 22, 2019, https://dukespace.lib.duke.edu/dspace/bitstream/handle/10161/13807/State of the Deep Southrevised online2.pdf?sequence=4, p. 3.

Amidst the AIDS crisis of the 1980’s, HIV was concentrated in urban metropolitan areas. While the concentrated infection proved horrifically devastating in the early years of the crisis, the relative proximity of patients has since allowed for far easier cataloguing of transmission vectors, as well as ensured greater infrastructure and financial support to benefit affected communities. In the South, however, the population is far less concentrated, and is dispersed across rural, semi-rural, and small-scale metropolitan spaces.  While only approximately 36% of the U.S. population resides in the south, American southerners comprised 51% of all new HIV infections in 2015.8Susan Reif, C. Micha Belden, Elena Wilson, and Carolyn McAllaster, “HIV/AIDS in the U.S. Deep South: Trends from 2008-2016,” (Southern HIV/AIDS Strategy Initiative, Duke University, June 2019), p. 2.  Also, the 2010 census reported that of the roughly 38.9 million African-Americans living in the country, 55% of them resided in a southern state.9US Census Bureau Public Information Office, “2010 Census Shows Black Population Has Highest Concentration in the South,” Newsroom Archive, United States Census Bureau, May 19, 2016. https://www.census.gov/newsroom/releases/archives/2010_census/cb11-cn185.html. Of these southern States, the traditional “Deep South” (Alabama, Florida, Georgia, Louisiana, Mississippi, North Carolina, South, Carolina, Tennessee, and Texas) has been particularly hard-hit by HIV/AIDS.10Susan Reif and Co., “HIV/AIDS in the U.S. Deep South: Trends from 2008-2016,” p. 8. These States have not only struggled with the highest HIV diagnosis rates in the nation, but also the highest associated mortality rates, standing at between 1.5 and 3 times the national average.11Susan Reif and Co., “HIV/AIDS in the U.S. Deep South: Trends from 2008-2016,” p. 9. This reporting may also not fully reflect the true severity of this ongoing epidemic, as underreporting remains a very real concern. 

Several factors work together to fuel the southern HIV crisis: geographic constraints (the large space necessary to travel in order to access healthcare), concentrated poverty (the clustering of extremely poor populations within poor communities), the prevalence of abstinence-based sex education, lack of adequate training within the medical community on HIV-related health issues, the criminalization of HIV-related risk behaviors (such as draconian anti-drug laws), White-controlled state and local governments that readily ignore issues predominantly affecting their African-American constituencies, and widespread stigmatization within the African-American community. It is difficult to ascribe primary culpability to any one of these factors, as they all play a part in this theatre of misery. Concentrated poverty leaves already low-income families saddled with additional burdens (including poor access to public facilities, poor access to quality healthcare, poor health outcomes, and poor educational opportunities) that make it effectively impossible to afford, let alone regularly receive, proper treatment.  Homophobia and criminalization, meanwhile, help foster a culture of fear that disincentivizes potential HIV-positive individuals from getting tested, risking further transmission. Persistent stigmatization of HIV in the Deep South has in effect forced individuals with HIV to remain hidden in the proverbial closet. Those that do choose to “out” themselves run many of the same risks that HIV/AIDS patients did back at the height of the original AIDS crisis. Southern individuals living with HIV continue to experience familial, workplace, healthcare, and governmental discrimination, as well as risk violence and harassment.12Bebe J. Anderson, “HIV Stigma and Discrimination Persist, Even in Health Care,” AMA Journal of Ethics: Illuminating the Art of Medicine, American Medical Association, December 1, 2009, https://journalofethics.ama-assn.org/article/hiv-stigma-and-discrimination-persist-even-health-care/2009-12. If their HIV-positive status is discovered, they may be denied or fired from work, removed from their homes, denied medical care, or be abandoned by their families.  In addition to southern-associated issues including concentrated poverty and HIV-specific criminal laws, the culture of silence within African-American communities also plays a role. As summarized by Phil Wilson (of the Black AIDS Institute), “you don’t tell other folks that there’s a gay son and that someone else in the family has AIDS.”13Endgame: AIDS in Black America, Directed by Renata Simone, (Boston: Renata Simone Productions, Inc, 2012), https://www.pbs.org/wgbh/frontline/film/endgame-aids-in-black-america/, 9:54. This general lack of communal admission or acceptance is complicit in the thousands of new infections each year. It should be no surprise that the old “Silence = Death” slogan has slowly begun to circulate amongst impacted Southern communities. For those continuing to live with HIV but who do not or cannot seek treatment, the lack of community-wide African-American discourse on HIV places thousands more at significantly increased risk of complications and disease progression. The silence also incentivizes those with HIV to keep their status a secret from everyone, including sexual partners.  This prospect may help explain how 91% of African-American women with HIV reportedly contracted it from heterosexual intercourse. Black “Respectability Politics” also plays a central role in fueling the stigmatization of African-Americans with HIV. Mirroring the cultural norms of the White mainstream, middle-class and wealthy African-American communities, which still remain organized around religious congregations, continue to characterize homosexuals and individuals living with HIV as immoral or degenerate.14Endgame: AIDS in Black America, 25:02, 25:44.

 The American struggle against HIV has been ongoing for nearly forty years. For much of that time, efforts to combat HIV/AIDS by activists, policymakers, and health care providers took place along the coasts.  Yet it has become increasingly apparent that all the while, the epidemic has proliferated freely across rural America. The deep south now stands as the current battlefield in a modern AIDS crisis, one that has primarily ravaged the African-American community.  While NGO’s and the Federal Government slowly move to confront HIV in the south, stigmatization and homophobia, geographic constraints, concentrated poverty, and the criminalization of HIV-related risk behavior continue to hamper (if not render impossible) efforts to provide adequate medical care. The continued stigmatization of HIV, both in White and Black America, makes accurate testing and reporting unduly difficult. This, coupled with high rates of poverty and southern State governments that have refused to expand their Medicaid programs (which would have covered uninsured HIV patients), exacerbates the situation.15Teresa Wiltz, “Southern States Are Now Epicenter of HIV/AIDS in the U.S,” Pew Stateline, The Pew Charitable Trusts, September 8, 2014, https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2014/09/08/southern-states-are-now-epicenter-of-hivaids-in-the-us. Given ongoing discrimination against African-Americans, as well as the continued stigmatization that comes with HIV’s close association with homosexuality and transgenderism, it appears unlikely that meaningful progress toward lowering infection rates and raising treatment levels among African-Americans will occur in the near future.  

Bibliography

Anderson, Bebe J. “HIV Stigma and Discrimination Persist, Even in Health Care.” AMA Journal of Ethics: Illuminating the Art of Medicine. American Medical Association, December 1, 2009. https://journalofethics.ama-assn.org/article/hiv-stigma-and-discrimination-persist-even-health-care/2009-12.

Centers for Disease Control and Prevention. “HIV and African Americans.” Centers for Disease Control and Prevention. Centers for Disease Control, November 12, 2019. https://www.cdc.gov/hiv/group/racialethnic/africanamericans/index.html.

Centers for Disease Control and Prevention. HIV Surveillance Report, 2017; vol. 29.  Published November 2018. Accessed December 22, 2019. http://www.cdc.gov/hiv/library/reports/hiv-surveillance.html.

Centers for Disease Control and Prevention. “U.S. Statistics.” HIV.gov, September 25, 2019. https://www.hiv.gov/hiv-basics/overview/data-and-trends/statistics.

Endgame: AIDS in Black America.  Directed by Renata Simone. Boston: Renata Simone Productions, Inc, 2012.  https://www.pbs.org/wgbh/frontline/film/endgame-aids-in-black-america/.

Moore, Mark. “President Trump Calls for Eradicating AIDS and HIV in 10 Years.” New York Post, December 1, 2019. https://nypost.com/2019/12/01/president-trump-calls-for-eradicating-aids-and-hiv-in-10-years/.

Pallipparambil, Godshen. “The Surat Plague and Its Aftermath.” Montana State University. Accessed December 8, 2019. http://www.montana.edu/historybug/yersiniaessays/godshen.html.

Reif, Susan, C. Micha Belden, Elena Wilson, and Carolyn McAllaster. “HIV/AIDS in the U.S. Deep South: Trends from 2008-2016.” Southern HIV/AIDS Strategy Initiative. Duke University, June 2019. HIV/AIDS in the U.S. Deep South: Trends from 2008-2016.  https://southernaids.files.wordpress.com/2019/06/sasi-report-hiv-aids-in-the-u.s.-deep-south-trends-from-2008-2016-final.pdf.

Reif, Susan. “State of HIV in the US Deep South.” HIV/AIDS Policy Clinic. Duke University. Accessed December 22, 2019. https://dukespace.lib.duke.edu/dspace/bitstream/handle/10161/13807/State of the Deep Southrevised online2.pdf?sequence=4.

Sangaramoorthy, Thurka, and Joseph B. Richardson. “Why the South Still Has Such High HIV Rates.” The Conversation, June 29, 2019. http://theconversation.com/why-the-south-still-has-such-high-hiv-rates-76386.

US Census Bureau Public Information Office. “2010 Census Shows Black Population Has Highest Concentration in the South.” Newsroom Archive. United States Census Bureau, May 19, 2016. https://www.census.gov/newsroom/releases/archives/2010_census/cb11-cn185.html.

Wiltz, Teresa. “Southern States Are Now Epicenter of HIV/AIDS in the U.S.” Pew Stateline. The Pew Charitable Trusts, September 8, 2014. https://www.pewtrusts.org/en/research-and-analysis/blogs/stateline/2014/09/08/southern-states-are-now-epicenter-of-hivaids-in-the-us.