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Upholding narratives of Black science and treatment activism, and community mobilization in HIV/AIDS and TB

By Suraj Madoori

In February 2016, startling data released by the Centers for Disease Control and Prevention (CDC) at the Conference of Retroviruses and Opportunistic Infections (CROI) predicted that one in two black American gay men will acquire HIV in their lifetime. Illustrative data, however, carries a danger of historicizing HIV, which has led to narratives that portray the Black community, especially Black gay men, as the ’new face of epidemic’ after a first-wave response led by mostly white gay men, when, as evidenced by Black activists, there has been a disproportionate effect on communities of color from the very beginning that no one has been paying attention to. It wasn’t until HIV appeared in white bodies that HIV became a threat, which sparked Black activism and mobilization to construct the reality of the HIV epidemic through data, organizing, and engaging with political structures to shift resources.

Even after 35 years of HIV/AIDS, the stories of critical Black activism are notably absent in the dominant media and movement narratives. Although a vibrant movement history has been depicted in biopics ranging from How To Survive A Plague and United In Anger, the narratives of activists of color have somehow remained sidelined against a white-dominant backdrop. Yet the contributions of early Black activism in resisting medical racism and catalyzing a much-needed racial analysis to advocacy offers lessons in how we can embolden the national response to address structural issues, human rights, and social justice as a means of strengthening efforts in HIV prevention, treatment, and care.

Keith Cylar and Robert Vazquez-Pacheco are two of the most well-known Black activists in ACT UP, with Cylar being important in the creation of the Treatment and Data Committee of ACT UP, progenitor to the present-day Treatment Action Group (TAG). However, Vazquez-Pacheco in a 2012 interview with, recalls the tensions in race and class that were present in the movement, citing Cylar and Moisés Agosto-Rosario, currently the Director of Treatment at NMAC, as activists of color that called for a deeper analysis:

One of the things that I saw was that the gay white men organized in ACT UP … let me preface this by saying that I will be forever grateful for them, because if they hadn’t done anything, we’d all be dead, but they organized because they knew that the system that they grew up with wasn’t working for them. It suddenly had betrayed them and didn’t actually care about their lives. They didn’t say that the system was flawed; they believed it could be repaired, tweaked for it to work better. Whereas for women and people of color, women and people of color said, “This system has never worked for us.”

Activists like Vazquez-Pacheco and Cylar challenged the dominant white narrative in a critical manner, suggesting that the epidemic among the African-American community was intertwined with deep systematic and sociopolitical injustices that complicated access to care and treatment. But this recognition and subsequent activism by African-American activists predates the HIV/AIDS epidemic. In fact, it may find its roots in an even more invisible racial narrative of an epidemic in the United States: tuberculosis.

Tuberculosis (TB) became one of the most infectious threats wreaking havoc among Black communities across the US in the beginning of the twentieth century. Much like the present-day HIV epidemic, infection rates in these communities would place the epicenter in concentrated urban centers with stark health disparities between Blacks and whites. For example, Professor and researcher of African-American History at Pennsylvania State University, David McBride, in his book From TB to AIDS, describes death rates as being 10 to 20 times higher among Black youths in Chicago in the 1920s than among their age-matched white counterparts. Similar patterns in TB death rates in the same decade repeated in urban Black communities in Baltimore, Cleveland, Detroit, New York City, Philadelphia, and Washington, DC.

But causative factors—such as growing poverty, socioracial divisions, migration, and unsanitary housing conditions—explaining the frequency of disease in poor Black communities were routinely ignored in a racially tumultuous era of American history. Instead, a theory of ‘racialized susceptibility’ to TB would be pushed by predominantly white public health institutions and supplant the epidemiology, leading to a simplified—and racist—notion that Black bodies were somehow ‘predisposed’ to TB infection. This skewed the public response to ignore obvious issues of racial justice that compounded the death rates among Black communities.

McBride further recounts the narrative of early Black community and science activism as being central to discounting theories of racial susceptibility and contagion in the US TB epidemic, in which a “community-based, Black public health sector provided a crucial bridge.” In the 1920s and 1930s, McBride argues, the community mobilization efforts by a small cadre of Black medical activists were critical for catalyzing both the clinical and theoretical movement against medical racism.

Among these activists was H.L. Harris, a Black public health researcher who criticized deceptive data, notably by a public reply to a widely held commentary on declining TB rates in the Black community through improved social conditions. McBride wrote that, although the white statistician-author acknowledged that better social conditions could improve TB rates in the Black community, the author continued to uphold the idea that Blacks had a racial predisposition to TB and “further blamed immoral social behavior of Blacks for [their] higher rates of illegitimate births and venereal disease.” In response, Harris argued that the slowness in the ability of the Black community to obtain benefits and access to adequate housing, better pay, and safer working conditions that were equal to those of white individuals would continue to result in excess deaths of Black people to TB, even as rates declined.

In his book Infectious Fear, Samuel K. Roberts, professor of history at Columbia University, details the story of another Black activist physician, M.V. Ball, who responded to published scientific literature on racial disposition to pulmonary TB. Roberts describes how Ball did so by discrediting methodology in sampling, such as the exclusion of critical controlling factors such as social class and past medical history in study samples, especially among the incarcerated.

As history would demonstrate again many decades later, an infectious scourge, social stigma faced by oppressed groups, lack of community representation in scientific institutions, and rising death rates would be conditions that catalyzed community mobilization and activism to fill the vacuum in the response. But most importantly, armed with science, Black activists were able to counter prevailing ‘scientifically supported’ research to build awareness on deeper socioeconomic challenges and racist conditions that heightened the TB epidemic among impoverished Black communities.

The need for a racial analysis and justice in the present-day epidemic remains an important and powerful framework for current Black HIV/AIDS activists. Kenyon Farrow, TAG’s U.S. and Global Health Policy Director and self-described “dance and theater kid,” recalls that his early days of working on incarceration issues with Critical Resistance led him to embrace science-based HIV/AIDS activism. What shifted for Farrow was the power of utilizing data to tell a story and create contexts for community mobilization to explain what was happening systemically among communities of color. Or similarly in the case of early TB activism, how data could be used to counter prevailing racist narratives about Black communities.

In the early 2000s, the ‘down-low’ narrative began to break, which included stories suggesting an epidemic of gay sex in prisons that resulted in Black men transmitting HIV to their female partners after being released. Farrow began questioning HIV transmission rates in jails, delving into the statistics, and came across a Bureau of Prisons report on HIV in prisons. Farrow found disparities in HIV rates, with more women living with HIV being incarcerated than men—placing an important spotlight on HIV and incarcerated Black women. Farrow described this revelation as being influential: “[It] changed my perspective on what I thought I could do and created a shift in me in how it [data and science] pertains to Black activism and organizing.”

The challenges are far from over. According to Farrow, one of the systemic failures that compels him to work on HIV prevention and treatment issues today is the decision by the U.S. Supreme Court to allow states to choose whether or not to expand Medicaid. The decision, would “break my heart,” says Farrow, pointing to excessive data analyses on the HIV and poverty syndemic that affects predominantly vulnerable Black communities in Southern states that are not expanding Medicaid, denying millions of people access to HIV treatment and prevention. Using these data now, explains Farrow, is vital for structuring a sociopolitical argument that links treatment and prevention access issues among Southern Black communities, and mobilizing activists to urge Medicaid expansion to fill this vacuum created by policymakers.

Black community mobilization and science-based activism in HIV continues to be vibrant and essential for shifting the landscape of HIV care and prevention. Current community-led HIV activism includes the Counter Narrative Project (CNP), an Atlanta-based organization that mobilizes Black gay men through a lens of Black gay culture. In particular, CNP, in their 2016 National HIV Testing Day Statement, has looked to the recent data analysis from CDC at CROI as a call to action for Black gay men to counter the narrative on what has been termed as a “fearfully formulaic and increasingly predictable” public health response. In doing so, CNP argues that the power of important advances in biomedical prevention and treatment will continue to lag in communities of Black gay men unless critical social and structural factors, such as stigma, homophobia, unemployment, criminalization, and even Medicaid expansion, are also addressed. According to CNP Executive Director Charles Stephens, this also includes making critical investments in Black gay men’s community institutions and movement leadership.

History has shown that Black activists, from TB to HIV, have repeatedly resisted the narrative brought forth by public institutions by providing the essential depth through a racial justice lens that clarifies specific targets to meet the needs of vulnerable communities with the potential to maximize treatment and prevention outcomes. In addition to Cylar and Vazquez-Pacheco, activists regard David Malbranche, Greg Millett, Dazon Dixon Diallo, Mario Cooper, Cathy Cohen, Bob Fullilove, Mindy Thompson Fullilove, Ibrahim Farajaje´, Craig Harris, and artists Essex Hemphill and Joseph Beam—even the dismantled Black Panther party—as critical individuals and institutions that have articulated intersectional health and social needs for Black communities in the current HIV/AIDS movement.

It will be the work of Black activists to shift the movement narrative into the next federal administration. Most recently, the national End the Epidemic (EtE) coalition was represented by the organizer and advocate Daniel Driffin, an HIV-positive, Black, gay man, before the 2016 Democratic National Convention, calling for more investment in research, prevention, and care with a critical eye towards improving data. Daniel’s words and representation certainly do not just highlight the current state of the epidemic, but resonate the depth of history and resistance pushed forth by many Black activists and are a call to action to mobilize communities on the inevitable policy challenges ahead.•

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