Community knowledge of PrEP and underground use

Some of the urgency around getting the concept of PrEP tested has been fuelled by a suspicion that members of high-risk communities are already trying the concept out.

One study presented at the IAS Conference in 2005 of 1046 gay men attending minority-ethnic gay pride events in four US cities1 found surprisingly high levels of HIV-negative gay men who had taken antiretrovirals in order to try and avoid HIV.

The researchers asked 1046 participants: “Have you ever used AIDS medicines before engaging in risky behaviour because you thought it would reduce your chances of getting HIV?” It also asked if they had heard of the PrEP concept at all.

A quarter of those questioned had heard of PrEP and 7% had actually taken it (presumably ‘borrowing’ HIV-positive friends’ pills). The researchers comment that the percentage of gay pride attendees who had taken PrEP was “surprising”.

The Los Angeles Times reported in December 20052 that tenofovir was being sold in packets along with Viagra and Ecstasy in gay dance clubs.

The newspaper also interviewed one HIV doctor who already prescribed tenofovir to very high-risk patients. Marc Conant said he recently began prescribing tenofovir to two uninfected men after they told him they were very sexually active and would not use condoms. Though troubled by the fact that the drug had not been proven effective for such a use and that his patients might be increasing their risky behaviour while using it, Conant said that using the drug was better than taking no precaution at all.

However, further surveys of community knowledge and use have shown lower rates of knowledge and use. A study was presented at the Toronto International AIDS Conference in 2006 of 851 gay or bisexual men attending San Francisco gay venues and an STI clinic, and a circuit party in Palm Springs.3 Overall, 18% of the men had heard of PrEP; not hugely lower than the 25% in the Kellerman study. Unprotected anal intercourse in the last six months was the only variable significantly associated with PrEP awareness. Newspapers and magazines were overwhelmingly noted as the top source of PrEP knowledge, followed by conversations with friends.

Reports of PrEP use in the entire sample were basically non-existent; only one patient from the sexual-health clinic claimed prior use (overall 0.12%). Investigators question the veracity of the patient’s claim because, upon further questioning, he reported being administered 30 days of antiretroviral medication from his doctor, and thus probably confused PrEP with post-exposure prophylaxis (PEP).

However, 68% said they would take PrEP medication daily if it was found to be safe and effective in preventing HIV transmission, and other studies have found that, amongst gay men at least, the majority would be willing to take it if it was proven efficacious and they needed to.

A 2009 study found that 75% of 227 gay male interviewees from Bostonwould be willing to take PrEP.4 Only one man reported previous use of pre-exposure prophylaxis, having been given ARVs by his HIV-infected brother. Five men (2%) reported knowing someone who had used pre-exposure prophylaxis and only 19% of men had ever heard of pre-exposure prophylaxis.

Overall, 74% of the men said that they would be willing to use pre-exposure prophylaxis in the future, having been educated about its potential to prevent HIV infection.

In multivariate analysis that controlled for age and race, the following factors remained significantly associated with a willingness to consider pre-exposure prophylaxis:

  • Less education (p = 0.04).
  • Income between $25,000 and $30,000 per year (p = 0.04).
  • No perceived side-effects from pre-exposure prophylaxis (p = 0.001).
  • Free access to pre-exposure prophylaxis (p = 0.05).

The investigators then looked at hypothetical situations when the men would be willing to consider pre-exposure prophylaxis. They found that 86% would be more likely to take such treatment everyday if they thought it would prevent HIV infection, 85% said they would be willing to take both pre-exposure and post-exposure prophylaxis after a ‘hot’ date, and 89% said they would be willing to take pre-exposure prophylaxis for all unprotected anal sex. The overwhelming majority (86%) said they would be willing to take pre-exposure prophylaxis even if it involved taking more than one pill daily.

Finally, a study from New York in 20105 found that 23% of a group of 180 HIV-negative gay men who used recreational drugs and had had at least one recent episode of unprotected anal sex (average: three in the previous 30 days) had heard of PrEP. However, only three (one in 60) said they had used it.

When asked if they would use 80% efficacious PrEP, 69% said yes. The more risky sexual acts men reported, the more likely they would be to use PrEP. Thirty-six per cent said that if PrEP of this efficacy was available, it would reduce their condom use.


  1. Kellerman S Knowledge and use of pre-exposure prophylaxis among attendees of minority gay pride events, 2004. Third IAS Conference on HIV Pathogenesis and Treatment, Rio de Janeiro, abstract WePe10.3P03, 2005
  2. Costello D AIDS pill as party drug? Los Angeles Times, 19 December, 2005
  3. Liu A et al. Low levels of pre-exposure prophylaxis awareness and use among HIV-negative/unknown gay/bisexual men: San Francisco Bay Area residents, circuit party attendees, and clients of an urban STD clinic. Sixteenth International AIDS Conference, Toronto, abstract THLB0101, 2006
  4. Mimiaga MJ et al. Pre-exposure antiretroviral prophylaxis attitudes in high-risk Boston-area men who report having sex with men: limited knowledge and experience but potential for increased utilization after education. J Acquir Immune Defic Syndr 50: 77-83, 2009
  5. Golub SA et al. Preexposure prophylaxis and predicted condom use among high-risk men who have sex with men. J Acquir Immune Defic Syndr, advance online publication, 2010
This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.
Community Consensus Statement on Access to HIV Treatment and its Use for Prevention

Together, we can make it happen

We can end HIV soon if people have equal access to HIV drugs as treatment and as PrEP, and have free choice over whether to take them.

Launched today, the Community Consensus Statement is a basic set of principles aimed at making sure that happens.

The Community Consensus Statement is a joint initiative of AVAC, EATG, MSMGF, GNP+, HIV i-Base, the International HIV/AIDS Alliance, ITPC and NAM/aidsmap

This content was checked for accuracy at the time it was written. It may have been superseded by more recent developments. NAM recommends checking whether this is the most current information when making decisions that may affect your health.

NAM’s information is intended to support, rather than replace, consultation with a healthcare professional. Talk to your doctor or another member of your healthcare team for advice tailored to your situation.