This is the first in-depth analysis of knowledge and awareness of AHI among individuals with acute/early HIV infection. Findings from this study provide several insights leading to recommendations for HIV prevention in the context of acute/early infection, particularly for communities at high risk for HIV transmission.
It is striking to note the lack of awareness of, or specific knowledge about, the concept of AHI among a group of respondents newly diagnosed with HIV and all living in cities in the U.S. marked by significant levels of HIV prevalence within the communities in which they reside. This lack of awareness was in three primary domains: (1) the signs and symptoms of an acute retroviral syndrome, (2) the different HIV testing technologies available, and (3) the heightened infectiousness during AHI, when an HIV antibody test is likely to be negative.
Our respondents were among a select population that was diagnosed during early infection, compared to most people infected with HIV. Nevertheless, while most respondents experienced physical symptoms during an acute retroviral syndrome, most were surprised to find out later, after the acute retroviral syndrome had resolved, that it was HIV that caused their symptoms. In hindsight, they realized that they could have (and perhaps should have) been diagnosed even sooner than they were.
Those few who did possess the knowledge about AHI symptomatology reported that they refrained from sexual risk behavior immediately, even before clinical diagnosis, while the majority only changed their sex behavior after diagnosis. Although most people do not engage in sex when sick with a flu-like syndrome, they are likely to renew sexual activity soon after recovering from their illness, as some participants reported (Steward et al., 2009
). Thus, it is critical to educate populations at risk for HIV about the signs and symptoms of AHI so that they can get diagnosed quickly after infection, and so they can prevent further transmission of HIV during the early stages of infection when transmission risk is high, including the period of time before diagnosis. A few of our respondents told us that had they known, at the time, that their illness was possibly a new HIV infection, they would not have gone on to infect others or put others in their sexual network at risk.
Populations at risk also need education about HIV-testing technology. Specifically, they need to know that during AHI an HIV-infected person will test negative by the traditional antibody test and that AHI is diagnosed using a direct test for the virus in conjunction with an antibody test. Furthermore, they need to be taught how and where to access such testing.
It is also important that communities at risk for HIV be made aware that while transmission is possible at any time after infection, the several month period during and immediately after AHI is the stage of HIV disease with the highest infectiousness. Awareness of AHI’s elevated infectiousness, particularly at a time when an antibody test may read negative, is important for people at risk of acquiring HIV, including those people who have adopted other prevention messages such as “test regularly,” “know your status,” and “know your partner’s status.” Lacking awareness of the significance of AHI, many people have come to believe that these guidelines are sufficient to protect themselves from acquiring HIV.
Increased knowledge of the elevated risk of HIV transmission during acute/early infection is also imperative for those who are diagnosed during acute/early infection. As we know from this and many other studies of people living with HIV, most people reduce their transmission risk behaviors, at least in the short term, after they discover they are HIV-positive (Steward et al., 2009
; Marks et al., 2005
; Weinhardt et al., 2004
). And while people do remain infectious throughout all stages of HIV disease, AHI-specific prevention efforts have the potential to significantly reduce risk behaviors during the most highly infectious period of the life of the person living with HIV.
More research is needed to determine the precise content and delivery of AHI education. For example, we need to know how to best inform people about the strong association between HIV acquisition and both flu-like symptoms and STDs, as well as when and where they should seek AHI testing, without causing hysteria or undue anxiety about any symptom they have or place an undue burden on the healthcare system, particularly during flu seasons. Future research can help identify ways of teaching people how to self-assess the need for AHI testing when physical symptoms occur in close temporal proximity to HIV transmission risk episodes.
Our results and those presented in the third paper in this series (Steward et al., 2009
) indicate that simply diagnosing AHI will lead many to significantly reduce their HIV transmission risk behaviors during the highly infectious period of acute/early HIV infection, without any additional behavioral interventions. However, research is needed to ascertain how to reinforce this tendency by effectively delivering messages about elevated infectiousness during early stages of HIV infection without contributing to diminished concerns about transmission in later stages, after antibodies are formed and there is greater viral control.
Our findings also suggest a need for AHI-related educational and training programs for counselors and providers, especially for those who work in communities with concentrated HIV epidemics. Training programs should aim to increase comfort and skill in discussing AHI (and STDs) with clients seeking HIV testing, treatment and care. Counselors and providers also need to be trained on how to conduct a behavioral risk assessment when seeing patients with flu-like symptoms and to learn where and how to conduct appropriate testing for AHI. Finally, research is needed to determine where, when, and how to provide this type of training, including who should deliver the training.
Many of our participants also told us that they sought and found useful information about HIV from the Internet, community based organizations, friends, and other sources, but that they did not see or hear much information about AHI. Since the Internet and community-based venues in particular are trusted sources of information for many people, we recommend increased efforts to provide information about AHI through these sources.
This study had important limitations. The majority of the sample was comprised of gay men recruited in urban environments. We do not know how these findings generalize beyond this population. The participants who had the most knowledge about AHI were gay men who were integrated into the gay community. Also, this was a select sample of persons diagnosed with acute or early HIV infection, whereas most people with HIV are not diagnosed until later in their disease course. However, it is probably safe to assume that the lack of knowledge about, and awareness of, AHI and the entire stage of recent infection would be even more pronounced among persons who are newly infected but not aware of their infection, even further underscoring the need for AHI awareness-raising. Another limitation is that we did not include care providers and counselors as participants in this research.