BY PERRY N. HALKITIS, PhD & DANIEL E. SICONOLFI, MPH | In 1988, I first tested for HIV. I was 25 years old and had only been out as a gay man for a few years. At the time — which in the history of the HIV/AIDS epidemic was the Dark Ages — my bloods were drawn by my physician, labeled accordingly in the collection tubes, and placed in a brown paper bag. It was then my responsibility to deliver the specimens to the New York City Health Department lab on First Avenue, where I placed the bag though a metal collection chute. I remember this experience vividly, as if it was yesterday, not only because of the fear that numbed my whole body as I walked to the labs, but also because of the rainstorm that had drenched me by the time I arrived at my designated destination. I then waited two weeks for my test results.
In the 30 years since the first detection of HIV-1 and the development of antibody testing (including the ELISA, the first antibody test), much has changed. Oral specimens can be collected or a finger can be needle-pricked, and rapid test results are available within 20 minutes. Thorough and thoughtful processes for pre- and post-test counseling have been developed and streamlined, and antiviral treatment advances have created a condition where the disease is no longer considered the death sentence it was in 1988.
HIV tests can be accessed for free in a myriad of places: in vans outside bars and clubs, at the bathhouses and sex parties (thanks to Dr. Demetre Daskalakis’s Men’s Sexual Health Project), in research settings such as our own at the Center for Health Identity Behavior and Prevention Studies (CHIBPS, chibps.org), and at many of our city’s leading AIDS service organizations — including GMHC (gmhc.org) and Harlem United (harlemunited.org).
A test can even be purchased at the local pharmacy. Over the last decade, HIV testing on a regular basis also has developed into a behavior that many gay, bisexual, and other men who have sex with men have incorporated into their lives. What has not changed is the fear and anxiety that overwhelms many men, especially young men, who undertake routine HIV testing to ensure that their health is intact.
In recent years, there has been a push on both federal and local levels to seek out those at risk, test them for HIV and, if seropositive, treat them with effective antiretroviral therapy. The underlying rationale is that early identification of disease will not only lead to better health outcomes for the individual who has seroconverted, but also help to avert onward transmission of the virus. From a purely scientific perspective, this idea makes sense. Yet HIV is not a disease that is always directed by reason and rational decision-making, and this “logical” approach to disease prevention neglects the social and emotional complexities of the disease and those who are affected by it. The experience of testing does not occur within a vacuum. Rather, it can be a process laden with misunderstandings, fear, apprehension, sadness, excitement, or relief.
If targeting, testing and treating were as easy to enact as they appear on paper, then the HIV epidemic could potentially be controlled. However, even with these advances in HIV testing in place, the disease continues to proliferate. Young Black and Latino men continue to be infected at extremely high rates in their adolescent and young adult years, while White men tend to seroconvert in their 30s and 40s. So why has the attempted “routinization” of HIV testing into our lives not effectively contained the HIV epidemic? Moreover, why have some gay men incorporated HIV testing into their lives while others avoid it as if was the 1980s with no hope in sight?
In the last several years — in an attempt to better understand the mechanisms of HIV testing as well as why some men fail to test for the disease — we undertook a quasi experimental study with our collaborators, Harlem United and the Centers for Disease Control and Prevention (cdc.gov), to fully consider the effectiveness of different strategies for engaging previously untested Black men into HIV testing.
At the same time, with our collaborators at the New York City Department of Health and Mental Hygiene (NYCDOH, www.nyc.gov/health), we conducted a study, locally known as Project Desire, to examine the life experiences, risks and resiliencies in a new generation of young gay, bisexual, and other men who have sex with men (MSM) ages 13-29.
The study used both survey administration and discovery-based interviews to give voice to a new generation of young men, their challenges, their resiliencies, their fears, and their HIV, health, and prevention needs. Daniel Siconolfi, one of the project directors of Project Desire and a public health scholar, drew some insights from this project with regard to HIV testing:
At a quantitative level, more than 85% of the young men we sampled had ever tested, and more than 80% had tested within the past year. 91% of Black men and 87% of Latino men had tested, compared to about 82% of Asian/Pacific Islander men and only 75% of White men. Younger men were less likely to have tested, as were men who still lived with their families, which is likely a developmental effect where younger men are less affiliated with mainstream gay and bisexual venues where testing is promoted and accessible.
We also examined how recently men had tested. Black and Latino men were more likely to have tested within the past year (87-90%) as compared to API men (70%) or White men (75%). In general, this represents high levels of testing, though there is a larger proportion of API and White men who have never tested or have not tested in the prior year. Thus, the levels of HIV infection might be a little higher than what we see for these two groups. A large proportion of Black and Latino men are testing, and testing regularly, and this is likely a reflection of the efforts by the local agencies to make the process accessible and routine. This also helps tackle the number of “late” diagnoses, or concurrent HIV and AIDS diagnoses, which can indicate that HIV infection was undiagnosed for an extended period.
Along these lines, we also compared testing rates grouped by three populations: New York City residents (i.e., 5 boroughs), New York City metropolitan area residents (e.g., Westchester, Long Island), and non-New Yorkers. About a third of non-New Yorkers had never tested, as compared to only about 13% of each New York group. As we surveyed these men at a number of gay social venues, it’s plausible that some of these men are having sex with New Yorkers while visiting. If their sexual behavior places them at risk for HIV transmission, it might present a pathway for unidentified infections both in and out of the city.
We also asked men why they had their most recent test. Overwhelmingly, men had tested as part of a regular check-up or test, or because they wanted to know their status. This self-agency indicates the feasibility of providing HIV testing in a routine manner, or better, integrating it within more holistic approaches to young men’s health and wellness. HIV testing is frequently offered as a separate, distinct service, though there is evidence that young men in particular see it as part of their health routine. About 11% had tested because they had potentially risky sex, and only 5% had tested because a health care provider had recommended it. Only 3% had tested as part of negotiated safety, or to stop using condoms with a partner or boyfriend.
These findings raise some points worth consideration. First, the efforts of the NYCDOH and our leading AIDS service organizations (ASOs) should be applauded for making testing accessible to segments of the population which might otherwise lack access to care.
Second, while the advent of rapid tests has made it possible to test for HIV quickly and easily, their utility can be limited by the window period. Since these tests screen for the body’s response to HIV infection, not the virus itself, there is some lead time before a test can actually detect a potential infection. Currently, this period ranges from one to three months — and if an individual has been infected with HIV in the past month, it is possible to get a “false negative” result. Our experience with testing and counseling suggests that some young men may not fully understand the meaning of an HIV-negative test result, especially in light of the fact that a significant potion of the young men in our sample had engaged in risky sex within the three-month window period. To this end, testing counselors must facilitate adequate and effective pre- and post-test counseling to correctly assess the client’s level of risk and to contextualize the results within the window period, if applicable.
When a client is given a copy of the results without context or without consideration for the window period, there is a significant potential for misinterpretation — a misunderstanding that may facilitate risk taking and the proliferation of HIV. If a recently infected young man uses an inaccurate “negative” result to forego condoms, he is at high risk for transmitting HIV to his partners. Knowing one’s own status and that of his partners can be a valuable way to reduce potential risk, but it presents a challenge when it becomes a means for enabling risk. Practitioners must bear this in mind when we exhort young men to “get tested,” or “ask your partner his status.”
Given the situation described above, some consideration should be given to the implementation of viral load testing (to complement antibody testing) as a standard of care for high-risk groups. This test looks directly for parts of the virus, and such tests may be able to detect infection within a matter of days, long before antibodies can be detected.
It has been suggested that the implementation of such tests as a standard of care are prohibitive — yet pooled assessments of plasma specimens provide a viable and financially feasible approach to implementing these procedures. Researchers in North Carolina have documented an effective way for combining ELISA antibody testing with pooled viral load testing.
However, in the absence of pooled viral load testing, effective post-test counseling is the best tool available to ensure a correct understanding of test results. Taken together — as testing becomes more accessible and commonplace — it must not come at the expense of adequate post-test counseling. A significant proportion of men that we pre- and post-test counsel have misunderstandings about HIV transmission, the window period, and important specifics like condom-safe lubricants (water or silicone-based) and unsafe lubricants (baby oil, petroleum jelly, etc).
The counseling session is a crucial and limited window of opportunity to provide information and skills that can help an individual remain HIV-negative. Further, we cannot assume that all men, especially young men, understand these nuances in ways that can be pragmatically integrated into their actual behavior.
Finally, HIV is intimately related to substance use and mental health issues — and the HIV post-test counseling session is a time when men may indicate a need for other support or services related to their health, mental health, or substance use. This provides an opportunity to link the individual with care both inside and outside of the organization providing the test. Unfortunately, public funding for HIV testing is structured and limited in a way that can inhibit the delivery of these linkages.
Agencies that provide HIV testing may not be funded to provide mental health services, and mental health service agencies do not always effectively incorporate HIV testing into their care. We hope that future funding efforts will recognize that HIV testing, sex, relationships, substance use and mental health do not exist within silos — rather, they are intertwined parts of the whole person.
Perry N. Halkitis, PhD, is Professor of Applied Psychology, and Public Health, and Daniel E. Siconolfi is a Researcher/Project Director at CHIBPS, at the Steinhardt School of Culture, Education, and Human Development, New York University.
