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Lindsay Roth, MSW, is on staff at the National Viral Hepatitis Roundtable and is a member of AVAC’s PxROAR Program. She works locally with Project SAFE, a harm reduction collective that provides direct services to women surviving street economies and tweets from @safephila.
I recently attended the 19th annual United States Conference on AIDS (USCA). This is my 3rd time attending, and as I am writing this I feel I am still processing emotions of excitement, solidarity and resilience. Especially with the inclusion of Hepatitis C (HCV)- specific programming, it is clear: the biomedical revolution many activists, scientists and other stakeholders have worked so hard for is upon us. Unlike the past years where PrEP was met with ambivalence, it is being unequivocally embraced as a key prevention method. For those co-infected with Hepatitis C, there are humane curative treatments with remarkable outcomes. For both HIV and HCV, Treatment as Prevention shows promise to eradicate these viruses from vulnerable populations. There is great optimism that we can test and treat our way out of both epidemics. But, in the context of a mass incarceration in the USA that is becoming harder and harder to ignore – can we?
“Biomedical stuff will get us 50 percent of the way there,” Barb Cardell of Positive Women’s Network said to me after my presentation on the visibility of Sex Workers in the HIV/AIDS National Strategy. The strategy offered a powerful framework for USCA, as it was recently updated from its first iteration in 2010. There are many things to be excited about in the President’s ambitious goals for an AIDS free generation. A federal commitment to ending HIV is still too new to take for granted. However, as was recently pointed out by Megan McLemore of Human Rights Watch, this agenda fails to recognize the impact of the criminal justice system on health outcomes. Indeed, biomedical interventions, even cures, mean little in the context of the hypercriminlization in the United States. The impact of mass incarceration is clear in 5 key populations in which the HIV (and HCV viruses) continue to impact disproportionately.
To clarify, mass incarceration is not only the number of people behind bars in this country — and of that we have many. It also includes the various means of justice involvement, including arrest, probation, parole and “alternatives to incarceration” (which are oftentimes not as liberatory as they sound). It is very important to recognize the expansion of our criminal justice system has done little to impact rates of crime and most people behind bars are not violent offenders.
Black Americans
#BlackLivesMatter activism was visible throughout the conference, and featured prominently in the opening plenary, which included presentations We Are the Protesters activist DeRay Mckesson; a long-time public health advocate Valerie Rochester of Black Women’s Health Imperative; and Valerie Spencer, a long-time advocate for Black transgender women. Following the event’s theme of “The Numbers Don’t Lie:” it is undeniable that HIV is disproportionately impacting black Americans and role of the criminal justice system in this disparity is irrefutable. Systems of mass incarceration have generational impact of black Americans, who then suffer poorer housing, education and, naturally, health outcomes. The disruptive factor of the criminal justice system — and an unfair and unequal one at that — needs to be addressed if we ever want to End AIDS.
Sex Workers
Sex workers were excluded yet again from the US strategy. Globally sex workers are considered a key population, yet in the United States the criminalization of prostitution continues to marginalize sex workers within HIV/AIDS prevention efforts. Anna Forbes explained that other countries, like South Africa and Ghana have recognized the role of sex workers in the HIV epidemic, and included them in national strategies through empowerment-based programming. Women from Casa Ruby presented on survival sex work, as the transgender individuals are systemically excluded from legal economies and resort to underground economies like sex work to survive. A participant noted, “The government puts a lot of money incarcerating transwomen [who do sex work], but zero into reentry.”
Jacquie Rorbage of Power Inside explained how women and girls are often forced into trading sex to survive in over criminalized neighborhoods, as well as in prisons and jails. While sex worker laws are recognized as exacerbating the HIV epidemic, the US has fortified prohibitionist policies towards sex work in past years. Rorbage and other presenters including migrant sex worker activist Elene Lam of Butterfly, argued that these laws do little to mitigate the trafficking or coercion of people in the sex trade, but further empower law enforcement to profile and target women of color.
Transgender Individuals
Prostitution laws are but one of the ways that transgender individuals are sucked into the ever-expanding web of the criminal justice system, and this disproportionately impacts transwomen of color. Studies show that young people overwhelmingly enter the sex trade out of necessity because they have been forced from transphobic homes. LGBTQ youth face extreme violence in the child welfare and shelter systems, where they have no protections.
I would be remiss not to mention in addition to this systemic violence faced by transgender individuals, at least 20 transgender women of color have been murdered this year alone.
Bamby Salcedo and #TransLivesMatter activists staged a protest demanding visibility of transgender and gender nonconforming people in HIV programming. Transwomen are often included as “MSM,” or men who have sex with men, which is a crucial misstep to understanding and addressing the needs and experiences of transwomen as distinct from gay men (I can’t believe I am even writing this sentence!).
This country has systemically banished transgender individuals to the streets and then punished them for doing so, and unsurprisingly this population experiences extreme health disparities. Ruby Corodo emphasized that this population needs more than an “HIV test and a gift card”. We need real systemic change that addresses homelessness and employment and reforms the criminal justice system.
People Who Inject Drugs
Much like sex work, the prohibitionist approach to regulating substance use in this country has severely compromised the way we can empirically understand substance use and substance users. This echoed through the conference wherein the treatment of people who use drugs is guided by stigma as opposed to evidence-based interventions. The Harm Reduction Coalition facilitated a harm reduction track to address these enduring issues. Currently, curative treatments for HCV — which impacts as high as 90 percent of substance users — are being withheld due to sobriety requirements. These requirements have no evidence base; in fact research shows us quite the opposite — that treating active drug users will reduce the burden of disease in networks where it is needed most. Drug users have been as successful as non-drug users in HCV treatments.
Syringe exchange programming continues to be celebrated despite a federal ban on funding this evidence based prevention tool. Despite the success of syringe access programs; participants, especially African America participants, still face tremendous targeting by law enforcement. The criminalization of drug users, and successful interventions in their lives, continue to thwart our push to end AIDS. The implementation of proven harm reduction programming remains crucial, but must exist alongside proactive efforts to change the draconian drug laws in this country. We will never end AIDS without ending the war on drugs.
People Living With HIV
The very survivors of this epidemic remain criminalized in direct and extreme ways. We all should know the about Michael Johnson, who now faces decades behind bars. Nearly two-thirds of states in the United States have laws that criminalize potential HIV exposure. Most of theses laws were developed before ART and have not evolved with scientific advances. Many criminalize low risk behaviors.
It would be wrong to address individual risk behavior in a vacuum. All people want to be healthy, yet folks from these historically marginalized communities are pushed out their homes, out of work, and out of care — and often right into prison or jail. It's systemic.
Effective, tolerable and accessible biomedical interventions means the end of HIV and HCV is in sight, but we, as patients, providers, policy makers and other stake holders must look across movements and work to dismantle the systems that make our efforts to end AIDS impossible.