Our Oral History Interview with Curtis Wadlington is now indexed and text-searchable at the African American AIDS History Project! Thanks to generous support from the Chris Webber Memorial Fund, we have been able to move forward with making the interviews for this project more accessible and usable through the Oral History Metadata Synchronizer. Thanks to Maria Santiago for her hard work indexing this interview—we’ll have more indexed interviews to share with you soon!
Considering the impact of the AIDS epidemic on African-American history.
Today at OutHistory’s blog, I (Dan) have a piece up about Ferguson, queer gentrification, and LGBT history, including AIDS and its disproportionate impact on queer African Americans. Go check it out!
African American AIDS Activism Oral History Project narrator Michael Hinson and Lisa Fader Bediako argue that HIV criminalization laws constitute a new prison pipeline for black men, on Global Grind.
The final design for the New York City AIDS Memorial, which will sit at the intersection of West 12th and Greenwich Avenue in the West Village, has been unveiled. The memorial will occupy a triangular site near the former St. Vincent’s Hospital, which offered treatment for people with AIDS early in the epidemic. As one commenter snarked on Architectural Record, the canopy in the new public park bears an unfortunate resemblance to a bus shelter, whereas the (more attractive, in my opinion) original winning design (also by Studio a+i) consisted of a grove of trees surrounded by three large mirrors, giving the effect of an “Infinite Forest.”
The memorial raises questions about how to commemorate an epidemic that has so thoroughly devastated New York City, and where 1.4 of the city’s population (and 5% of Chelsea residents) today is reportedly living with HIV. Does the construction of a memorial further contribute to our sense of living in a “post-AIDS” world (which the advent of life-saving drugs in the late 1990s seem to inaugurate) while the epidemic rages among white gay men as well as in the most disenfranchised communities? Does placing the memorial in a wealthy, gentrified section of the city erase the loss experienced by other parts of the city that have also been heavily affected–say, Harlem or the Bronx? I realize the irony of my asking the first question, as someone actively involved in recording and writing the history of AIDS in US communities of color, but I think it’s one that the idea of the memorial encourages us to consider. On the other hand, it’s worth noting that San Francisco has had its “living memorial” in Golden Gate Park since 1991.
From actup.org, a bonus rendering of the memorial at night! The lighting on the structure does make it seem somewhat less like a bus terminal.
I hate to follow up a post about moving on from the ignorance of the past with something that strongly suggests a return to past ignorance, but the Kansas state legislature seems likely to pass a bill that would allow for the quarantine of people with HIV, along with hepatitis B and C, and tuberculosis. The bill itself eliminates the court order presently necessary for emergency personnel to have a patient tested for certain infections when the personnel have been exposed to said patient’s blood. Critics like D. Charles Hunt, Director of the Kansas Bureau of Epidemiology and Public Health Informatics, and Cody Patton of the AIDS service organization Positive Directions, Inc. say the law will put people with HIV at risk for intimidation and discrimination, especially in rural areas where people may be ignorant of how HIV is spread. Of course, HIV is not transmitted in the same way a tuberculosis, and emergency personnel using universal blood precautions are at essentially no risk of contracting the virus from an HIV-positive person. Even in the case of an accidental needle stick or scalpel cut, post-exposure prophylaxis is available, and dramatically reduces the probability of transmission. So it seems that ignorance about HIV is a problem in Topeka, too.
One thing that comes up consistently in oral histories is the problem of conspiracy theories around HIV and AIDS in black communities. These can take many forms, from the idea that the government created the virus to the suspicion that a cure exists but is being withheld because the epidemic has been immensely profitable for the pharmaceutical industry. Studies have shown that belief in such theories correlates to lower adherence to HIV medications, which in turn can quickly limit the range of medical options people have to treat their HIV disease. A friend in medical school told me that he has seen people–young people–on AZT as a treatment of last resort because non-adherence to their drug regimen rendered all of the newer, better, less toxic medicines ineffective.
Conspiracy theories about HIV among African Americans don’t come from nowhere–they emerge from the collective, historical memory of slavery, Jim Crow, “Mississippi appendectomies” (i.e. forced sterilizations), and the Tuskegee syphilis experiments, as well as the everyday racism that African Americans encounter in medical settings. But that doesn’t let the government off the hook for actually making them seem more valid with laws like this one.
Given that treatment adherence is hard enough for some folks as it, and that adherence to a drug regimen a) prolongs the life of PWAs and b) likely prevents new HIV infections by lowering the viral loads of HIV-positive people, Blue Cross has so much blood on its hands. Can we get a phone zap up in here?
Once again, Blue Cross has created a new “tier” of pharmacy benefits – Tier 4, a.k.a. “specialty” drugs a.k.a. a long list of medications for the treatment of HIV (they’ve included a few cancer and other drugs as well – though literally every single medication used for the treatment of HIV is now Tier 4) and for which there are no alternative or generic medications.
And what is different about this tier? Well, rather than a standard co-pay (it was $30.00 per prescription in 2012), patients are required to pay 20% of the cost of the medication or $150 maximum. Since all of the medications are expensive, the bottom line is that most co-payments are $150 or close to it, i.e. a 400% increase in out-of-pocket expenses for those being treated for HIV. In other words, Blue Cross has specifically targeted their most vulnerable patients as a new source…
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by Dan Royles
PBS recently aired Endgame: AIDS in Black America as part of its documentary series FRONTLINE. Viewers unaware of just how prevalent HIV and AIDS are in black communities may be shocked to learn that today half of new HIV cases in the United States, including two-thirds of those among women and 70% of those among youth, occur among African Americans, who make up only about 13% of the national population. These numbers are nothing new. As filmmaker Renata Simone makes clear, when doctors initially identified AIDS among gay men in 1981, they built a case definition for the new disease around the opportunistic infections presented by those first patients, inadvertently precluding many women, who suffered from different ailments, from receiving AIDS diagnoses. By the time that the Centers for Disease Control added female-specific infections to the case definition in 1993, the severity of the AIDS crisis among women had been undercounted for twelve years. Given that black women account for the majority of women with HIV and AIDS in the United States, the underrepresentation of women with AIDS led epidemiologists to underestimate the severity of the disease among African Americans as well. Moreover, as white gay men became the public face of AIDS in popular media accounts of the epidemic, many African Americans came to see the epidemic as one that would never affect them personally.
In Endgame, this sense of insulation from AIDS comes across most poignantly in the firsthand stories of women contracted HIV through unprotected sex with boyfriends or husbands who either did not know or did not disclose their own HIV positivity. However, Simone also gives voice to a wide range of experiences of AIDS among African Americans. Viewers hear from HIV positive gay men, a social worker illegally distributing clean syringes in Atlanta, young adults who contracted the virus in utero and now are coming of sexual age, as well as a host of public health experts, doctors, preachers, and activists.
Simone connects these individual stories to broader the broader social, cultural, and political forces driving the AIDS epidemic in black communities. For example, viewers see Alabama educators discuss their commitment to the state’s abstinence-only sexual health curriculum and then meet Marvalene, a young HIV-positive woman who explains that the textbook for her wellness class in high school showed only pictures of an African child and an emaciated white gay man in its discussion of AIDS. Viewers also hear from HIV-positive black gay men of different ages who trace their drug use and risky sexual choices to the various degrees of homophobic rejection they faced at home, school, and church. Failed education and homophobia represent only two nodes in a dense web of interrelated factors that underpins the racial disparity in HIV/AIDS in the United States, which Simone ably elucidates through interviews with longtime researchers and activists such as Robert Fullilove of Columbia University, Phill Wilson of the Black AIDS Institute, and Dázon Dixon Diallo of Sisterlove, Inc.
Putting the epidemic in historical context, Fullilove testifies to the economic dislocation that many black communities faced in the 1970s and 1980s, which fueled a growing drug trade as a source of income for black men who couldn’t find jobs in the licit economy. The explosion of crack in particular during the 1980s left many infected, as users (particularly women) hard up for a fix turned to sex work to satisfy their habits. Blaming crack for urban crime rates, lawmakers passed harsh sentencing laws for possession and distribution of the super-addictive drug, landing many black men in prison, where sex among inmates is common but condoms nearly absent. Upon release, they return to communities experiencing gender imbalance due to the disproportionate incarceration of black men, in which women feel disempowered when it comes to negotiating monogamy and safe sex, in part because there are so many fewer men than women. Two interviewees from late in the documentary hit the nail on the head. Dr. Lisa Fitzpatrick argues that the structural factors driving the epidemic demand structural solutions, while another interviewee describes AIDS as a “string” running through the fabric of black communities, highlighting the lingering racial inequalities in American society.
Both women are right, although like the statistics on AIDS in black America, their arguments are nothing new. For much of the epidemic, AIDS activists of color in particular have used AIDS as a means by which to draw attention to persistent issues of inequality in their communities, often putting issues like access to housing, education, and basic medical care at the forefront of their efforts. As Jennifer Brier has argued, they sometimes couched their work in an international context, advocating for global justice in the epidemic by addressing the structural inequalities faced by African Americans and people throughout the global south alike. As Bambi Gaddist of the South Carolina AIDS Coalition tells Simone (though in a different context), “I’m in Africa right now. As a state, I’m there. Sometimes, my staff feels like we’re there. Every time we test another young person positive, we’re there.”
Though Simone spends a great deal of time and care laying out the context for the disproportionate impact of AIDS on black America, in the film she gives very little attention to the political response of African Americans to the epidemic. In an early oral history for my own dissertation on the political culture of black AIDS activism, an informant lamented that to read what has been written on AIDS politics, one would think African Americans let the disease “steamroll over” their communities, and to some extent Endgame reinforces that myth. However, the supporting materials, including an excellent timeline, on the FRONTLINE website begin to flesh out that history of activism.
Also absent from Endgame are the voices of HIV-positive straight black men, save for Magic Johnson and the “bornies” who contracted the virus before birth. Otherwise, they appear (or rather do not appear) as duplicitous off-screen figures who fail to protect their female partners, or in the case of incarcerated men, as possible vectors of infection once they re-enter their home communities. Even the inmates who do appear on screen are shown speaking only to a doctor, who in turn addresses the camera in discussing their potential for spreading the epidemic further. Representations like this arguably do more harm than good. Making a serious dent in AIDS numbers means empowering everyone who is affected to openly talk and engage in safer sex, and that means straight men as well as women and gay men.
Altogether, Endgame is a thoughtful and emotionally powerful examination of AIDS among African Americans that does justice to the complexity of the epidemic and the challenges that lie ahead in the fight to stop it. It’s worth reiterating, however, that the disproportionate impact of AIDS on black communities–and black women in particular–is nothing new. Nevertheless, it seems as though almost every piece of reporting on HIV/AIDS among African Americans trumpets similar statistics as though they were some new revelation about the “changing face of AIDS.” Is this simply the persistence of the disease’s initial framing as “gay cancer,” as Simone suggests, or does it speak to a more pervasive inattention to the inequalities in American society that continue to drive the epidemic? The real endgame here seems to be that to real get to the heart of the problem, we need to address some very deep structural problems in the United States, and that kind of change doesn’t come easily.
Read more: Kenyon Farrow has a more critical review of Endgame on his personal site. Right after the documentary aired, Gawker put up cash to find out who gave HIV to Magic Johnson. Not to overuse a tired phrase, but if that’s the big question you took away from this film, you’re doing it wrong.