The Silent Epidemic: How HIV is Killing my Peers

Many people have probably seen the video channel, It Gets Better, started by Dan Savage in response to the suicides of Billy Walsh and other gay teens. It Gets Better tells an important message to young gay teens; that as bad as it seems now, as lonely and isolating as high school and even college can be, it does in fact get better. As a gay teen (although just barely, turning 20 this March) I can appreciate the necessity  of the It Gets Better project. I am sure the project has helped countless teens when it seemed like there was nowhere else to turn.

The It Gets Better project has been a runaway success and I am sure it has been effective in preventing teen suicides. It also got me thinking about how we could use similar projects to address other problems that effect gay youth. One problem that has been inexcusably ignored for the past two decades is the HIV epidemic in young gay men. The rate of new HIV infections in young gay men has been increasing every year since about 1992. In 2006, the number of new HIV infections in just young gay men (ages 13-29) exceeded 10,000. Unfortunately, the situation is not getting any better, and by 2008, the CDC reported that the number of new HIV infections in young gay men was increasing by 12% a year.

The suicides of gay teens received a lot of press in 2010 and for good reason. Each one of these suicides is tragedy and totally unnecessary. I am proud to say that the gay community, my community, responded quickly and effectively. But why doesn’t anyone seem to care about gay teens getting HIV? After all, it is much more likely that a gay teen will get HIV then he will commit suicide (the total numbers of suicides in all young people was 4,559 in 2004). I am not trying to minimize suicide prevention or reducing homophobia–these are noble and essential goals–but I just wish that the community and the press would also give some importance to preventing young gay men from getting HIV.

Some of the little attention that is given to HIV in young gay guys consists of fear-based PR campaigns that are probably as ineffective as they are unpleasant. The recent HIV prevention campaign launched by the NYC Department of Health called “It’s Never Just HIV” is typical, video below.  The point of this campaign is to demonstrate that HIV infection has many negative side effects (osteoporosis, anal cancer etc.) and therefore getting HIV is bad. This seems pretty obvious. I would say that most people know that HIV/AIDS is bad for your health. It would be like an anti-suicide ad telling people “don’t commit suicide, dying sucks” or teen pregnancy prevention campaign saying “don’t get pregnant”.

What people don’t know (and need to know) is how to avoid getting HIV while still being able to have a normal sex life.

This brings me to the “use a condom every time” message that is present in this campaign and most others. In a perfect world, this would be a very effective message, but in the real world, it might be more harmful then good (hear me out). The main problem is that this message is a vast oversimplification of the truth. In reality, there is a huge difference in the probability of getting HIV from unprotected oral sex, then say unprotected anal sex (unprotected anal sex is probably 100 to a 1000 times more likely to transmit HIV then unprotected oral sex).  Treating all sexual acts like they pose the same risk to HIV transmission is simply not true. The problem with this dishonest, “one size fits all” approach is that while it exaggerates the risk of certain sexual acts (e.g. oral sex), it also understates the risk of truly high risk sex acts (e.g. unprotected anal sex).

It reminds me of realization that me and many of my friends made after smoking our first  (marijuana) joint in high school. Our whole lives we had been told “Don’t do Drugs”, and that doing any drug will ruin our lives, destroy our brains etc. etc. Yet after we took the plunge and got stoned, nothing that major actually occurred. We didn’t drop out of school, we didn’t go crazy, we just ate a disgusting amount of potato chips and laughed at South Park. So after that, we (stupidly) concluded that all the stuff that health class taught us was lies. Of course, some of it was true, some drugs are really dangerous, and have a high probability of negatively impacting our lives. We just did not know which parts were true and which parts were lies. But that’s the problem with half truths, it’s hard to tell which half is true and which half is false. Wouldn’t it have been better if the teachers had just been honest with us; saying if you’re going to do drugs, weed is not that dangerous, but heroin, crack etc. is actually incredibly dangerous and can ruin your life.

That is how I view sexual practices. Unprotected oral sex is like pot, a low risk activity, and unprotected anal sex is like crack or heroin, something that you never do (unless you are in a committed monogamous relationship). And, to be honest, I have never engaged in protected oral sex nor have I ever met anyone who has (who wants to eat a Popsicle with the wrapper on?) yet at the same time, I have never had unprotected anal sex and won’t, unless I am .

In every activity we do, there is some element of risk. Waking up, crossing an intersection, driving to work, all of these activities are surprisingly dangerous. We learn from a young age, however, that in order to live, we must take risk. When possible, we try to minimize risk, but we know that we will never eliminate it.

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Does PEP act as a “disinhibitor”?

Whenever I talk to people about PEP, people are almost always curious as to whether PEP acts as “disinhibitor”. A disinhibitor, as it’s name implies, is something that causes a reduction in one’s inhibitions. In the context of HIV and PEP, a “disinhibitor” is something that makes someone more likely to partake in activities that put them at a high risk for contracting HIV , for instance, unprotected sex. Many people assume that PEP will result in disinhibition; thinking that once people are aware that PEP exists and is effective (although not 100%), they will be less concerned about contracting HIV and thus, more likely to bareback or use dirty needles. The empirical evidence, however, disagrees with this hypothesis. In fact, one study demonstrates the opposite, i.e. that PEP actually acts as a inhibitor and people are less likely to have unsafe sex after PEP then before (See Figure 1). Not a single study suggests that PEP results in increased risky behaviour or disinhibition.

Mean number of times participants engaged in unsafe sex in the 3-month period prior to receipt of PEP (baseline) and in the 3-month period prior to the 6- and 12-month visits following receipt of PEP.

What is important to remember, however, is that although PEP does not increase risky behaviors, it does not appear to be very effective at decreasing risky behaviors either. PEP is not a cure all, it is still only a last resort. If we really are to combat the HIV epidemic effectively, we must promote comprehensive, effective and honest sex education, the most powerful inhibitor known.

The following three studies are the most cited about PEP and subsequent behavior:

Use of postexposure prophylaxis against HIV infection following sexual exposure does not lead to increases in high-risk behavior. Martin et al. AIDS. 2004 Mar 26;18(5):787-92.

Behavioral impact, acceptability, and HIV incidence among homosexual men with access to postexposure chemoprophylaxis for HIV. Schechter et al. J Acquir Immune Defic Syndr. 2004 Apr 15;35(5):519-25.

Nonoccupational postexposure prophylaxis, subsequent risk behaviour and HIV incidence. Poynten et al. AIDS. 2009 Jun 1;23(9):1119-26.

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PEPnow Launch

Welcome to PEPnow.org. I hope you find it useful and informative and if you don’t, please leave a comment or send me an email so we can make improvements. With the help of a lot of people, I launched PEPnow in November of 2010. I learned about HIV Post Exposure Prophylaxis (PEP) a few years ago, when I was as a summer research intern at a medical school in New York City. PEP was standard practice when medical personnel accidentally got stuck with a needle.

But I did not learn about PEP’s use in non-occupational (e.g. sexual or injection drug) context until the summer of 2009. I stumbled across it accidentally, when I was trying to quantify the precise risk for HIV transmission following a given incident of unprotected sex. This was a relatively challenging question to answer and after a good round of Pubmeding, I stumbled across a 2005 paper in the CDC journal, Mortality and Morbidity Weekly Report, which in the appendix had a nifty chart providing probabilities of transmission for different sexual acts (this table has since been added to Wikipedia and PEPnow).

With my super-nerdy desire for quantification satisfied, I decided to read the abstract of this paper. The paper explained policy recommendations of the US Department of Health and Human Services (HHS) for post-exposure prophylaxis following “Sexual, Injection-Drug Use, or other Non-occupational Exposure to HIV”. HHS recommended a month of Highly Active Antiretroviral Therapy (HAART) following any high-risk exposure (e.g. unprotected anal sex, dirty needles) even if the source was not known to be infected with HIV. This significantly reduces one’s chance of becoming infected with HIV after an exposure.

This perplexed me. I was familiar with the idea of PEP from my work at Mount Sinai, but I never had heard of it being applied within the context of sexual exposure. I considered myself to be a (relatively) informed, gay, 18 year old, who had two years of sex education at a liberal high school and had read his fair share of “safe sex” pamphlets. How had I missed reading or learning about PEP? I then did a little research on the web and found that information on non-occupational PEP was pretty scarce.

I was at greater potential risk of expsoure through the sexual “route”, then the occupational route, yet no one told me PEP could also be implemented following sexual exposure.

My confusion turned to anger. If I had never heard of PEP and had to spend a considerable amount of time to find info on the web, what was likelihood that a significant percentage of people at risk knew about PEP? This begged an even more alarming question: how many people needlessly became HIV positive because they did not know about PEP?

This is particularly disturbing when one considers that the HIV transmission rate continues to rise in young gay men. Public health officials often seem perplexed about how to address this rise in infections. PEP alone won’t solve this problem, but it certainly should be part of the solution.  Not educating young men who have sex with men about PEP is a terrible failure of the public health system and AIDS prevention advocacy.

Neither the government nor most AIDS service organizations have made access to or education about PEP a priority. Some claim PEP acts as a “disinhibitor”, i.e. it makes people more likely to partake in unsafe sexual activities and therefore it may have the unintended consequence of increasing the HIV transmission rate.

It should be noted that not a single scientific study supports this view, and some in fact suggest the opposite, that the use of PEP actually decreases risky behavior. Even without the empirical evidence, one should be able to dismiss this view, as this is the same flawed logic that people have used to oppose real sex education, availability of condoms, emergency contraception (plan B) etc.

The lack of attention to PEP is symptomatic of a greater problem in HIV policy and perhaps American medicine in general. HIV public health policy has stopped innovating; we no longer pursue effective new ways to educate a new generation of men and women about how to prevent acquiring HIV.

By December of 2009, my friend and mentor, Sean Strub, convinced me to start a website to provide practical information about accessing PEP. Sean provided invaluable assistance and advice, and I am sure that without his help, this project would have never reached the stage it is in now. A particular thanks is owed to Tom Viola and his colleagues at Broadway Cares/Equity Fights AIDS, who provided a modest grant to cover the expenses of launching and promoting this site. Their confidence in someone as young as I was both surprising and encouraging to me.

While working on this project has been an incredible educational experience and challenge, it is also was disillusioning. PEP has been recommend by the federal government since 2005 (some state governments started recommending this even earlier). In the five years since, no government agency, AIDS service organization or HIV prevention advocacy effort had created a comprehensive website to facilitate access to PEP.

Why hasn’t the Centers for Disease Control (CDC), with their hundreds of millions of dollars in HIV prevention funding, start a national database of PEP providers in 2005, after they published their recommendation in the MMWR? Why didn’t the hundreds of AIDS organizations prioritize promotion of PEP?  A therapy with the ability to prevent someone from becoming infected with HIV should be known and accessible to every person who might find themselves at risk, after a condom breaks or they do something they regret.

My chemistry professor (who was a retired colonel in the US Army) at Simon’s Rock at Bard College used to say “The Ultimate Weapon is an Educated Mind”. While I do not have the experience to comment on the validity of that quote in a military context, I am sure that the quote is true for HIV prevention.

I hope this website educates people to prevent transmission of HIV and I hope it inspires those agencies responsible for preventing HIV transmission to step up to the plate and become leaders in educating the community about PEP.

Please help build the database of PEP providers on the site by submitting entries and encouraging everyone you know to help promote PEPnow.org. Thank you

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