MYTH 21

GETTING TESTED ON A REGULAR BASIS HELPS PREVENT THE SPREAD OF HIV

Many people assume that getting tested for HIV on a regular basis makes common sense and is unquestionably good medicine. The logic behind this assumption is that you may not know if you’ve contracted HIV. If you don’t know, then you can’t get treated for it. If you are having unprotected sex during this time, you may also unintentionally infect others. That’s a lot of “ifs” when your life, and others’, are on the line. But these “ifs” connected to testing need not be so confusing. The only way to prevent the spread of HIV is by wearing a condom during anal or vaginal intercourse. Testing, in and of itself, does not stop the transmission of HIV. How testing came to be understood, falsely, as a preventive sexual practice, verging on a form of wishfully safer sex, tells a broader story about how we’ve responded to the AIDS epidemic in the United States since its very beginnings. Reading about this myth could save your life.

The first reported cases of what was later called AIDS (acquired immune deficiency syndrome) were diagnosed in openly gay men showing symptoms of fairly rare diseases, such as Kaposi’s sarcoma (KS) and Pneumocystis pneumonia (PCP). In 1981, these cases were reported in Morbidity and Mortality Weekly Report, a publication of the Centers for Disease Control and Prevention (CDC). Doctors had no idea what was causing the outbreak. They knew only that it was affecting gay men who lived in urban areas. Pathologists first called the combination of symptoms, which they understood to be not a single disease but a syndrome, “gay-related immune deficiency” (GRID). They had no understanding of how transmission occurred but suspected that it was through exchange of bodily fluids, probably during certain sexual acts, possibly even kissing. Within weeks after the first cases were reported, the mainstream media presented gay male sexual activity and, by association, all homosexuality as dangerous. Although it became immediately apparent that women, IV drug users, and hemophiliacs were also showing the same symptoms, these new at-risk groups did not change the media’s focus on gay men.

Media coverage shaped the story that gay men, already understood as abnormal and deviant, were to blame for the outbreak. A fear of gay men and gay male sex had long been rampant in the country. Many media stories stated overtly, or implied, that GRID was punishment by nature or God—or both—for the unchecked gay male “lifestyle” that emerged from the sexual and political liberation movements of the 1960s and 1970s. This promoted hysteria and alleviated the fear that the so-called general public could contract the disease.

In 1983, researchers discovered the virus that caused the drastic suppression of the immune system and ensuing symptoms. It was officially named HIV, for human immunodeficiency virus, in 1986. Infection with HIV did not mean you had full-blown AIDS; the diagnosis of AIDS was given only when a patient was diagnosed with severe symptoms of the opportunistic infections associated with AIDS. Nonetheless, the HIV virus was always present, although sometimes at undetectable levels, in an infected person’s semen, blood, breast milk, and/or vaginal fluids. It took years for researchers to discover and understand all of this information.

During this time, gay male and lesbian activists and sex educators began thinking about how to have “safe” sex: sex that would prevent the transmission of HIV by preventing semen from coming into contact with porous mucous membranes in the anus or vagina. These guidelines were later followed by heterosexuals as well. While safe-sex strategies went through repeated transformations as more information about transmission was discovered, they were all based on simple logic. Where sexual transmission was concerned, HIV could spread only through anal and vaginal intercourse. So, wear a condom.

Under most circumstances, HIV is transmitted from the penetrative to the receptive partner. However, recent studies have demonstrated that it is possible for a woman to transmit HIV to a man through vaginal intercourse. This is especially true if the man is uncircumcised, since the underside of the foreskin of the penis, composed of mucus-membrane-like cells, more easily allows the virus to enter the blood stream. Although HIV can be present in vaginal fluids, it is not present in the rectum. The only chance of contracting HIV from an HIV-positive receptive partner during anal sex is if the rectum is bleeding and the penis has a fissure or is uncircumcised. In all cases, the penetrative and receptive partner can prevent the spread of HIV if the penetrative partner wears a condom. There is no evidence that HIV can be contracted through oral sex.

To be clear: testing is important, necessary, and useful. But it has nothing to do with how HIV is spread. We are debunking the myth about the virtues of regular testing to help stop the spread of HIV and to help you from getting it. It makes complete sense for a sexually active person to know his or her HIV status. According to the CDC, almost eighty percent of HIV-positive men ages eighteen to twenty-four in the United States are unaware they are infected. If you are HIV-positive, knowing your status early can expedite lifesaving drug therapy. But you don’t need to get tested unless you’ve had unprotected intercourse, feel you have exposed yourself to HIV by sharing needles, or otherwise come into contact with blood through an open sore or cut.

Nonetheless, testing has come to bear the weight of so many questions and anxieties around sex. This is clear in how the logic of testing has changed in response to a social and cultural history that has identified gay male sex as dangerous, and closely associated gay male identity itself with HIV/AIDS. In the early years of the epidemic, it was imperative for a gay man to know his HIV status because he may well have been engaging in unprotected sex during a time when no one knew about HIV or AIDS. There was a general cultural panic about any sex that was not straight sex. But how, then, could gay men be safe? Using a condom made sense. But the idea of “safe” took on increasingly broader and vaguer meanings. Did safe only mean using a condom? Or also dental dams for oral-genital or oral-anal contact? And what about gloves for fisting? Did safe mean not having sex with too many people? Did safe mean not having sex with the wrong kinds of people? Did safe mean being monogamous with one life-long sexual partner? Did safe sex mean no sex? The cultural dictate to be safe didn’t ban sex; it gave a series of contradictory rules and recommendations about having sex, all in the context of fear and confusion.

Things have improved less than you’d expect. The most recent CDC risk-reduction literature lists condom use last among other prevention strategies that include “choosing to stop having sex” and “limiting [your] number of sex partners.” These recommendations are, respectively, as unrealistic and inaccurate as they were in response to the very first HIV/AIDS cases. To introduce other ways to be safe beyond wearing a condom does not mean you are more safe; it confuses what being safe means and what exactly the danger is that you’re protecting yourself against.

Public health officials, as well as family and friends, continually offered the one suggestion that could cut through all the contradictions they themselves exacerbated: “don’t risk it.” The message was that any one preventive measure might not be enough. Condoms, for example, did not eradicate or kill infected semen; they only collected it in a thin piece of rubber. The fact that HIV could still be present, if nontransmissible, during sexual activity put the safety and danger of sex into constant question. Fear clouded judgment, and people were being told to get tested because everyone was scared of what could happen. This increased the amount of guilt and shame over doing something wrong, as well as the emotional and psychological power of the possibility of danger. The message was: you could always be safer, but you could never be safe enough.

All of this has, ironically, perverted the purpose of testing. We now live in a time when people get tested so they are not scared. The myth that regular, and now widespread, testing for HIV will stop the spread of HIV/AIDS, rather than simply inform you of your health status, is based on the understandable need to feel safe. It is very difficult to resist that need when it’s often cloaked in the concerned advice to “be careful” and “stay alive.” However, feeling safe is not a prevention strategy. In fact, it is useless when it comes to HIV transmission. The mythology of safety gives a reassuring, yet false, sense of security to you and the people who care about you—and it comes with a high cost.

The ambiguities of danger and safety that drive our national discussions about health, sex, and HIV/AIDS are almost always strictly demarcated along lines of right and wrong, good and bad. This is largely because the confusion and fear of ambiguity are most quickly alleviated through generalization. Anthropologist Mary Douglas writes in her classic study Purity and Danger: An Analysis of Concepts of Pollution and Taboo that fear serves a social purpose to contain danger and make it less threatening. Douglas explains, “Ideas about separating, purifying, demarcating and punishing transgressions have as their main function to impose system on an inherently untidy experience. It is only by exaggerating the difference between within and without, about and below, male and female, with and against, that a semblance of order is created.”1

The logic of repeated testing is part of the social and emotional management of sexual danger. Its false sense of security reinforces the larger narrative that outsider groups such as gay men, bisexual males, sex workers, and men on the “down low” (a term first used to describe African American men, and now adopted by men of all races who have sex with men but don’t identify as gay) are all too sexual or inappropriately sexual. Thus they are inherently dangerous and pose severe threats to a system of order and health. Gay men are not immune to this thinking. They come to see one another as safe or dangerous according to stereotypes of age, race, class, geography, and religion. Perceptions of safety also vary depending on how respectable a person seems, how reckless an online profile sounds, or, most tellingly, whether or not potential partners advertise when they were last tested and what their results were.

Ironically, maintaining these imaginary cultural separations as strictly as possible ends up being even more dangerous. Assigning danger to some clearly demarcated people, whose differences you believe are absolute, makes people worry less about themselves. This is clear in abstinence-only education. There is no evidence that abstinence-only education stops young people from having sex or even delays the average age at which they start doing so. But there is clear evidence that young people educated to believe abstinence equals safe sex, and a larger sense of safety, are significantly less likely to use birth control, especially condoms, when they do have sex—leading to the transmission of STIs as well as to pregnancy.

A long-term monogamous couple, whether two gay men or a woman and a man, provides another example. This couple probably already knows each other better than people who have anonymous or casual sex. Their familiarity presupposes health and safety and the belief that there would be no need to use condoms. But this feeling of safety does not take into consideration people’s past sexual histories or the possibility of undisclosed affairs. The same pattern may be present in serial monogamy, in which a person has a string of serious sexual relationships, but only one at a time. Our culture has perpetuated the myth that it is not the sexual acts you perform but the number of partners you have that places you at risk for HIV/AIDS. This promotes an irrational fear of out-of-control sexuality. In other words, our culture touts monogamy, including serial monogamy, as a way to feel safe.

People want to feel and be safe. And they don’t want to be seen as self-destructive and dangerous to others. Often people get tested to demonstrate not only that they’re currently negative but that, in an act of magical thinking, their sexual lifestyle is, was, and will be safe and trustworthy. This is why the “community standard” of responsibility for many gay men is to get tested and share their status with their sexual partners. This is a problem when a positive test result invites rejection, or even vilification, if divulged. People understandably lie about their positive status to ward off rejection. Bisexual men may not even want to have this discussion with women, since it may out them as a man who has sex with men. Many sex workers—male and female—are in even more-difficult positions. If they disclose that they are HIV-positive, they might lose their clients, or possibly put themselves in physical danger if a client becomes angry. Yet their potential unwillingness to divulge their status, or even get tested, is somehow seen as imperiling everyone else. Twenty-four states have enacted laws that criminalize HIV-positive people for not disclosing their status either, in some states, before any sexual act, or in others, before unprotected intercourse. And most cities have increased legal sanctions on sex workers, thus making their lives even more dangerous.

For the generation of gay male youth who grew up in the 1990s and after, safety was conflated with self-esteem, self-acceptance, and individuality. This was not just in regards to gay male sex but health and sex education in general. Repeated testing brings acceptance beyond gay male communities. It also signals responsible sexual citizenship within a mainstream heterosexual public. Ironically, the more widespread cultural validation around testing becomes, the more it separates testing from whether you have actually exposed yourself to HIV through sex. The US Preventive Services Task Force now wants to make testing a regular part of a yearly checkup for everyone, gay and straight. Health officials’ emphasis on the potential danger of HIV transmission has created a situation in which the average person is encouraged to exert less personal power and agency to define sexual safety for him- or herself. The result has been decreased competence and knowledge about our sexual selves, relations, and judgments.

The implications for continued HIV transmission are catastrophic. Infection rates among men who have sex with men have remained steady or increased since the early 1990s—even as they have gone down, overall, among heterosexuals and IV drug users. According to data released by the CDC in 2012, the prevalence of HIV in urban areas among men who have sex with men, ages twenty-three to twenty-nine, increased 16 percent from 1994 to 2008. (Prevalence is defined as the number of persons living with HIV at a given time.) The prevalence of HIV among those ages eighteen to twenty-two remained steady over this time at 11 percent. But between 2008 and 2010, new HIV infections among men who have sex with men increased by 12 percent. For those ages thirteen to twenty-four, the increase was 22 percent. In twenty-one major US cities, one in five men who have sex with men is HIV-positive.

Gay men have not forgotten the danger of HIV. These statistics apply to the generation that grew up under the looming presence of safe-sex messages and education. Nonetheless, they may not be sufficiently outraged over the epidemic for two main reasons. First, because of effective drugs, they may not know people who are dying of AIDS. Second, and more insidious, many gay men have internalized the imperative to be “safe,” in its varieties of vague meanings, and channeled their worry about HIV and the urgency to “be safe, be safe!” into either getting tested themselves or relying on other men to get tested.

For many people, the logic of testing is now: get tested so you know that you’re negative and can have unprotected sex, and then repeat. Drug companies have facilitated this logic, and the compulsion to get tested, by releasing new at-home rapid HIV tests that make it easier to get tested, share your status, and have unprotected sex. If you feel you need to get tested and don’t feel comfortable doing so at a clinic or doctor’s office, then taking an at-home test makes sense. However, at-home testing kits can also promote unwarranted fears even as they promote a false sense of safety. How much really is there to worry about if you or your partner always wears a condom? And if you don’t? Well, at-home tests also routinize testing as if it should become a new kind of foreplay: what you do before you hook up, often to have condomless sex.

And an even more recent example of contradictory suggestions on how to be safe is the release of pre-exposure prophylaxis (PrEP), drugs that can lower the chance of infection, but at rates significantly lower than a condom. Even though the companies who manufacture these drugs advise that they be used with condoms, many men are excited about the safety the drugs promise because they don’t want to wear condoms. The talk surrounding PrEP drugs ultimately increases the real danger of HIV transmission by offering yet another way to be safe, yet not completely.

Having sex without a condom may very well feel more exciting, but how a sex act feels is inseparable from how it’s valued socially, culturally, psychologically, and emotionally. Young gay men today must negotiate the proscriptions and prescriptions of a history of pleasure and danger. They view this cultural inheritance as an unnecessary burden of extra sexual responsibility. They reject HIV/AIDS as not their history, and may even distance themselves from older generations of gay men whom they see as more closely associated with it. Even the CDC recommends, in a pamphlet aimed at those ages thirteen to twenty-four, the very population where one in four new HIV infections occurs, “not having sex with an older person who may be more likely to already have HIV.” Following these suggestions does not mean you have clarified the sexual danger for yourself, or lessened your anxiety about it. Quite the opposite.

The mythologies of safety around abstinence, monogamy, and avoiding bad sex can actually lead to HIV transmission. This is equally true of the myth that testing prevents the spread of HIV. It can easily lead to its transmission. The actual danger of transmission is less and less clear to people who get tested when they don’t need to or don’t know if they need to. So the need to use a condom becomes less clear, too. Testing is only a small part of a much larger myth of safety around sex. All sexuality has unknown risks. So does walking down the street. But in putting too much pressure on the possibility of danger, the safety myth has done two things: obscured the only way HIV transmission can be stopped—by wearing a condom—and created a new, ever-more-powerful risk for transmission: feeling too safe.