Testing Beyond Control

In search of support, not surveillance

IN July, Prince Harry took an HIV test live on Facebook. For a representative from the Terrence Higgins Trust, a UK-based AIDS service organization, the Prince’s test sent a clear message: “Testing for HIV is easy, quick, and nothing to be feared.”¹

The Royal test is the latest instance of a long -- and successful -- line of publicity efforts to reduce the stigma around HIV testing. Today, testing is a nearly unquestionable aspect of HIV care. AIDS service organizations are expected to administer tests. Pro-testing advertisements are ubiquitous. Testing is as institutionalized as condoms and Red Ribbons.

In a world with HIV treatment but no cure, testing can be a lifesaving measure. The earlier someone living with the virus gets treatment -- so the story goes -- the better their long-term health outcomes. An HIV test can help testees maintain a negative result, or link someone who tests positive to care. And in an era of shifting HIV funding, testing opens up pockets of money. Aside from individual horror stories -- often including slut-shaming service providers -- the rationale of testing goes unchallenged. The historical impulses for testing are ignored, and the value of a positive result is sacrosanct.

Activist Loren Jones is a board member of the Positive Women’s Network USA, a group that works to strengthen the power of women living with HIV. When Jones tested positive, she was homeless and living in a community of similarly marginalized folks. Early in her life with HIV, she made the decision to not tell anyone: “I could not afford to lose what little I had, in terms of companions and lovers, such as they were. Besides, I was healthy, and really did not trust a society or medical profession that didn’t really like people like us anyway.”²

Jones is not alone in her distrust. From the beginning, testing never solely provided care. Alongside care, and beneath its guise, HIV testing controls, contains, and surveils its subjects.

In 1983, early in the AIDS epidemic, the US Food and Drug Administration (FDA) implemented a blood ban, pressuring researchers to develop a tool for screening the HI virus. By 1985, the FDA approved the enzyme-linked immunosorbent assay (ELISA) test and screening of the nation’s blood supply commenced. Within months, the US Department of Defense became the first institution in the country to implement an HIV testing program, testing all armed forces personnel and discharging those who tested positive -- despite the DOD’s awareness of the large number of false positives.

For people living with HIV, their loved ones, HIV activists, and others already responding to the virus, the governmental turn toward testing signaled a move in the wrong direction. Members of the Presidential Commission on AIDS, created in 1987, worried testing did little to help those with positive results, especially in the face of no effective treatment. The highly polarizing then Surgeon General C. Everett Koop said testing compelled “those infected with the AIDS virus [to] go underground out of the mainstream health care and education.”³

The National Lesbian and Gay Task Force framed HIV testing through the lens of civil liberties, arguing “no one should be forced into that position, particularly given the potentially severe social, legal and economic ramifications of testing.”⁴

Perhaps due to their less fraught relationship with the medical establishment, gay men started to get tested before other HIV-impact communities, such as Haitians and drug users. At a time when one could be fired for same-sex desire, testee’s willingness to participate shocked the confidentiality subcommittee of the AIDS-based coalition New York AIDS Network. According to the subcommittee, never before had “so many gay men so willingly offered so much information about themselves and their lifestyles to government researchers…Can we be certain that the CDC would not share this information?”⁵

Increased talk about mandatory testing of high-risk groups -- such as gay men and drug users -- only amplified these fears.

Ironically, these two highly stigmatized communities had already autonomously implemented their own harm-reduction procedures by the mid-1980s. As early as 1982, with the publication of How to Have Sex in an Epidemic: One Approach, safer sex was actively promoted within gay communities. And in 1986, drug users themselves opened up one of the earliest US needle exchange programs in New Haven, Connecticut was opened by folks within the drug using community. Impacted communities developed their own solutions. They needed support, not top-down intervention.

In President Ronald Reagan’s 1987 speech devoted to HIV/AIDS, he laid the groundwork for our current era of control, containment, and surveillance: “AIDS is surreptitiously spreading throughout our population, and yet we have no accurate measure of its scope. It is time we knew exactly what we were facing. And that is why I support routine testing.” In an analysis of this speech, historian Jennifer Brier remarks, “In language eerily reminiscent of the cold war he was fighting with the Soviet Union and communism, Reagan wanted to stop the ‘surreptitious’ invasion by finding all people who tested positive for HIV.”⁶

Within months of Reagan’s speech, Congress voted to screen everyone entering the US and turn away those who tested positive. HIV was a disease of the other. The year before Reagan’s speech, the New York Times published an op-ed by William F. Buckley Jr. calling for people living with HIV to be tattooed. As some people saw it, this was one step away from calling for quarantine, an idea that, according to a 1985 Los Angeles Times poll, 51 percent of Americans supported.

In many ways quarantine was already occurring: in hospitals, people living with HIV suffered in filth and hunger because staff refused to enter their rooms. In some cases, regional health departments went as far as to remove and isolate people living with HIV from the general population. Testing has always been inseparable from isolation. In the logic of top-down HIV/AIDS treatment, first you identify the person living with the virus, then you separate them socially, economically, and, in some cases, physically.

IN the early years, for impacted communities, knowing one’s status was not even a priority.⁷ A positive test result did not necessarily improve testees health. Most likely, someone who tested positive in the 1980s would be pressured to take AZT, a medication that, at the doses it was prescribed, often made people feel sicker than before. Writer and archivist Sur Rodney, who left a lucrative future in the art world to care for his friends, did not see the point of the test. Like many, he assumed he was positive because he had been doing all the same things as everyone who was dying. Years later, when he got tested and it came back negative, he assumed his virus was somehow undetectable and the results were showing a false negative. Sur lived as if he was positive.

In his journals, artist and author Gary Fisher wrote about sex, race, and family -- with an awareness that he is most likely living with the virus. In 1987 he wrote about telling his editor, queer theorist Eve Kosofsky Sedgwick, that he thinks he has ARC (AIDS-Related Complex, an early name for AIDS). He is “freed up to write, to let loose on the wonder.” For Fisher, a diagnosis is neither a goal nor an end. His goal is connection. In Fisher’s final published entry, he muses, “40 million people will have it by the end of the decade. I’m in good company. I’m in plenty of company. I’m less afraid. It’s a big, big room and it’s full of everyone’s hope I’m sure.”⁸

The grassroots response to HIV emerged through the creation and maintenance of informal networks: friends, activists, caregivers, the dying, their lovers, and many others in sweet, complex relations. Life with HIV encompassed all those involved regardless -- yet respectful -- of status difference. But the top-down pressures and institutions of testing displaced the impacted community’s treatment practices. As the AIDS response professionalized, individualist logics dominated. Government-sponsored initiatives eclipsed the epidemic’s communalism. Certain bodies were marked as problems. Testing divided communities through the creation of binaries and -- as would soon be clear -- not just between positive and negative.

WITH the introduction of Highly Active Antiretroviral Therapy (HAART) in 1996, the meaning of a positive result changed. It became useful information, a step towards long-term health.⁹

It ushered in Treatment as Prevention (TasP), a strategy to reduce the risk of transmission by medicating people living with and without HIV. For HIV– people, TasP is post-exposure prophylaxis (PEP) and pre-exposure prophylaxis (PrEP), regimens of HIV meds taken before or after possible exposure, which work to prevent the virus from taking hold in the body. For HIV+ people, TasP refers to pharmaceutical treatment suppressing one’s viral load to an undetectable level, thus making transmission impossible. Undetectable is now a status, which has transformed the surveillance of people living with HIV. Before TasP, people with the virus would talk to their doctor, other poz folks, and loved ones about their “T-cells” or their “CD4 count,” measures of their body’s capacity to fight off infection. But now in the face of Undetectable, T-Cells and CD4s have been replaced by talk of viral load, a metric for potential transmission. The higher the viral load, the more transmittable the virus. Discussions about health have been replaced by monitoring of metrics of communicability.

TasP should have been liberating for people living with HIV. It should have provided a sense of agency, but instead it has become a burdensome imperative. Beginning with a positive test result, TasP leads to further surveillance (called “adherence”). It can frame people living with HIV as disease vectors to be treated not for their own sake, but for the good of the public -- a public which they seemingly do not belong to. TasP harkens back to the early days of the epidemic where public opinion divided people living with HIV into the categories of innocent or guilty. Hemophiliacs, children, and white women who got the virus from their husbands were innocent. Gays, drug users, and people of color were not. Now, in a lurch of misguided “progress,” people living with HIV who have achieved an Undetectable status have been added to the innocent side.¹⁰

Beyond positive and negative, a new binary marker has emerged: are you suppressed? This rhetoric is clear in campaigns such as “HIV Stops with Me” a stigmatizing slogan masked as empowering mantra: the only thing preventing the end of AIDS is people living with HIV.¹¹

In the pre-HAART, pre-TasP world, people avoided HIV testing because of their sense of community and the lack of treatment. Now, people avoid testing because of the stigma, the lack of community, and, of course, criminalization.

In US communities where both HIV and imprisonment are endemic, a popular slogan is “take the test, risk arrest.” Currently, over 30 states have laws that can result in arrest and which specifically target people living with HIV.¹²

The criminalized behaviors include the non-disclosure of HIV status before sex, pregnancy, and, in one case, sneezing.

Not only are these laws harmful to people living with HIV, cases stemming from arrests due to the law do not even take into consideration risk of transmission, whether transmission occurred, or whether transmission can be traced to the person charged. Neither someone’s possible undetectable status, nor the advent of PEP and PrEP, are considered in cases of HIV criminalization. For the most part, these laws authorize the further policing of people living with HIV who are already criminalized. For example, if a sex worker with HIV is picked up on solicitation charges, HIV non-disclosure if often added.¹³

In keeping with the rhetoric of testing, the notion that a person living with HIV is a biohazard -- a threat quantifiable through surveillance -- underpins the logic of HIV criminalization. It should come as no surprise then that HIV-criminalization laws were beginning to be drafted precisely as HIV testing was introduced.

TODAY, there is a US-based movement, led by people living with HIV, to end laws HIV criminalization. In many ways, folks in the fight are starting from scratch, since the history resistance to HIV criminalization -- often tied to the resistance of HIV testing -- has been erased.

This summer, the HIV is Not a Crime training, a large gathering of anti-criminalization activists, met for the second time. Criminalized activists living with HIV shared personal stories, strategies on how to repeal the laws, and successes from states where HIV criminalization laws have been -- as they say within the movement -- modernized to be less harmful.

In a similar vein, in 2015, an anonymous group of activists created an online guide called, “How to Have Sex in a Police State,” which analyzed the notion of “take the test, risk arrest.” Even without testing, they wrote, a person could still be charged after participation in activities deemed high-risk for HIV transmission. Instead of delaying testing, they suggested staying under the radar as much as possible: get tested without giving your legal name, be clear with health care providers that you seek “support not surveillance.”¹⁴

In 2015 Atlanta’s Grady Hospital released results from an opt-out HIV testing initiative that tested all incoming emergency room patients for HIV. Around half of the people who tested positive -- as many as 16 to 20 a week -- were also being given an AIDS diagnosis. This means they were living with untreated HIV for so long it progressed to a near intractable state, making positive health outcomes harder to achieve.

There are no definitive explanations as to why these folks did not get tested earlier. Media analysis of Grady identified HIV stigma, lack of insurance, and the historic and ongoing medical mistreatment of black people as some potential reasons. And, predictably, most of the coverage called for more testing sites, thinking, if only access to testing was more available, new infections would decrease. This TasP-informed reasoning is not necessarily accurate. Ask anyone who does testing in areas with a large numbers of people living with HIV, and they will tell you these communities are actually over-tested.

For writer, activist, and Atlanta native Charles Stephens, “the centralization of the clinic, representative of the investment in resources in emergency room settings and large healthcare institutions often at the cost of community organizations and community driven-approaches and leadership, will not put us on a path to health equity.”¹⁵

Ensuring positive health outcomes, Stephens argues, means replacing fear with empowerment and support.

Similarly, the New York City–based collective What Would an HIV Doula Do? -- which I am a founding member of -- explores how the AIDS response can reprioritize communalism. Testing is central to our conversations, especially the trauma that may come before and after a test. The experience of living with HIV begins long before a result. Member Martez Smith recalled watching BET as a kid, as three men spoke about living with HIV, including a young flamboyant guy. “That’s me,” Smith remembers saying to himself. Years later Smith became an HIV tester. After giving his first positive result to someone, he thought, “Damn, this is me.” Three months later he tested positive himself. As part of the Doula collective and his work in the Ball community he brings an awareness that, for folks in communities where HIV is prevalent, testing often does not often offer new information, it may confirm what is already assumed.¹⁶

In this register, Martez Smith and Prince Harry’s experiences of testing were similar. The Royal PR machine probably felt certain the result would come back negative, just as Smith knew his might be positive. Testing alone is not care. It is not the problem, nor the solution. It is a moment of transition, which should result in continued support. Until control, surveillance, and criminalization are replaced by care, support, and community, testing will remain a risk factor for people living with HIV.