Why HIV Science and Treatment Literacy Matters

BTAN cohort shows off certificates of completion following rigorous training in HIV science and treatment literacy.

Throughout most of the HIV epidemic, the condom was the primary technology for preventing sexual transmission. For decades, HIV prevention efforts focused on changing people's behavior. They sought to help people recognize their HIV risk and to take steps to avoid acquiring the virus—either by delaying sexual intercourse or by using a condom during intercourse.

Treatment as Prevention

In 2011, the HIV-prevention enterprise dramatically changed, with the release of results from the HPTN 052 trial, which found that antiretroviral therapy reduced the risk of sexual HIV transmission by 96 percent. The implications of this landmark study were immediately apparent. The very drugs that have transformed HIV infection from an automatic death sentence to one that is often chronic and manageable also have the potential to stop the epidemic in its tracks.

Additional biomedical tools have since been proven to help prevent HIV, yet antiretroviral therapy remains by far the most potent prevention tool available.

The HPTN results, however, also quickly raised profound questions about the effectiveness of prevention efforts. Even though Highly Active Antiretroviral Therapy (HAART) has been widely available in the U.S. since the mid-1990s, the annual number of new HIV infections has remained steady, at around 50,000.

In reality, gaps across the HIV care continuum diminish the therapeutic and prevention benefits of HIV treatment. The most recent CDC analysis found that while 86 percent of PLWHA know their HIV status, only 40 percent are engaged in regular HIV medical care, and only 30 percent have reached viral suppression. Without viral suppression, PLWHA fail to reap the full health benefits of treatment and the communities they live in lose the prevention benefits of lower community viral load.

The central aim of HIV prevention efforts must be to close these gaps in the treatment continuum and to increase the share of people living with HIV who are virally suppressed to the highest level possible.

Informed patients and communities are vital to this quest to maximize viral suppression. People at risk of HIV appear increasingly to be getting the message that learning one's HIV status is essential, as the proportion of people living with HIV who know their status has steadily risen and is now approaching 90 percent. However, far too many people who are diagnosed with HIV do not understand the clinical and prevention benefits of immediate HIV treatment, fail to grasp the importance of regular clinical monitoring and/or don't take their medicines as prescribed.

Some people, especially those who remember earlier times in the epidemic, may fear that current HIV treatments have some of the same side effects that proved so challenging for early HAART regimens, when in reality current treatment regimens are relatively simple to take and easy to tolerate. For other PLWHA sub-optimal patterns of medical utilization stem not just from a lack of awareness or misconceptions but also from life challenges that impede regular engagement in medical care, such as poverty, housing instability, substance use, mental illness and violence and abuse.

Other Antiretroviral-based Prevention Tools

Although a central focus of HIV prevention must be improving outcomes for people living with HIV, people who are uninfected but are at high risk of HIV infection also need strategies to lower their risk of acquiring the virus. In recent years, various antiretroviral-based methods have emerged to complement the well-documented prevention benefits of condom use, harm reduction measures for people who inject drugs and other risk-reduction measures.

These antiretroviral-based methods appear to be powerfully effective. This is especially well documented for daily, oral pre-exposure antiretroviral prophylaxis (PrEP), whose efficacy exceeds 90 percent for individuals who take the regimen as prescribed. Initiation of antiretroviral therapy within 72 hours of a significant exposure (known as post-exposure prophylaxis, or PEP) is as another prevention tool for HIV-uninfected people who engage in high-risk activities. These antiretroviral-based strategies are especially important for young Black gay men, whose HIV incidence (measured at 5.9 percent by one major research cohort) is roughly equivalent to the rate of new infections among young women in Southern Africa.

Few people are taking these antiretroviral-based medications to date, especially among the populations that need these potent prevention tools the most. The maker of Truvada, a recommended regimen for PrEP, actively promotes the drug for therapeutic use but has declined to actively promote its use for PrEP. Scattered demonstration projects are underway, but their implementation has been slow, especially among young Black gay men. With young Black gay men experiencing HIV risks that are among the highest in the entire world, that low public health priority placed on rapid scale-up of PrEP in high-risk populations is perplexing.

But there are additional reasons why these new prevention tools have yet to be taken up. According to a recent survey by the Henry J. Kaiser Family Foundation, slightly more than one-quarter of gay and bisexual men in the U.S. know about PrEP, only one in 10 know someone who has taken PrEP, and the vast majority report hearing little or nothing about PrEP. Mis-statements in the media—suggesting that PrEP is far less effective than condoms, when in fact the efficacy of these two strategies is comparable when individuals closely adhere to the daily regimen—may have fed a certain skepticism, among potential users and the broader HIV workforce, regarding the effectiveness of this still-new prevention strategy.

For all antiretroviral-based prevention methods—including PrEP, PEP and HIV treatment as prevention—consistent adherence to the prescribed regimen is pivotal. Only individuals who fully understand the importance of adherence and the consequences of non-adherence will have the means to make full use of antiretroviral-based prevention tools.

Adapted from the Black AIDS Institute Report, "When We Know Better, We Do Better: The State of HIV/AIDS Science and Treatment Literacy in the HIV Workforce," published on February 5, 2015.