Wednesday, May 4, 2011

I Haven't Given Up, I've TAKEN CHARGE - One Man's Story of Taking HIV Meds for Prevention

... a "How are you healthy?" super deluxe installment, by Nick Literski

Recently, I was surprised to learn that I had allegedly “given up on gay men.”

According to Michael Weinstein, president and founder of the so-called “AIDS Healthcare Foundation,” I now consider the lives of gay men, including myself, “disposable.” What great crime have I committed to deserve Mr. Weinstein’s condemnation? I take Truvada once a day, as pre-exposure prophylaxis (PrEP), in order to protect myself from HIV infection.

My partner and I have a mutually open relationship. In reaching that point, we did the responsible things that a new couple should do to protect themselves. We used condoms until we’d been together long enough to rely on HIV testing. We then chose to be fluid bonded, while always playing “safe” with other sexual partners. Every six months, we were both dutifully tested for the HIV virus, usually going to the local testing facility together. We were screened on a regular basis for other sexually transmitted infections. If we made a mistake with regard to our agreed precautions (and yes, I did so on at least one occasion) we were honest with each other.

About two years into our relationship, we were surprised to hear that my partner’s HIV test was “inconclusive,” and that the testing facility would be submitting it for further testing. A week later, we called back for the final report, and were relieved when an obviously hurried staffer told my partner he was “just fine.” We continued our very active sex life, which almost always involved me being the receptive partner in anal intercourse. During the next few months, however, my normally robust partner had an unusual number of illnesses, particularly skin infections. He became suspicious, and since we were nearly due for our six month testing anyway, he scheduled another test.

As I sat in the waiting area, I received a two word text from my partner: “I’m positive.”

To make matters worse, the staffer had pulled my partner’s chart, and found that his last “inconclusive” test had actually been positive. Due to the mistake of a careless (former) staffer, we had received an incorrect report.

As traumatizing as it was for my partner to find out that he was HIV positive, and as angry as he was about the earlier false report, he was truly terrified that he had exposed me to the virus innumerable times over the past several months. I was promptly tested, and we were relieved to learn that both my rapid testing and RNA results were negative.

Even so, my partner continued to experience tremendous anxiety over the possibility of infecting someone he loved. His worry extended to all sorts of seemingly-mundane possibilities, even to the point of not wanting me to share the same handle on our interchangeable-head electric toothbrush. While it’s normal for newly-seroconverted men to experience high levels of anxiety regarding sex, the impact on our intimate life was profound. My partner had experienced enough broken condom incidents over the years that his concerns weren’t alleviated by using them. At the same time, it was difficult for me to adapt to continuous condom use, due to both physical discomfort and my own emotional response to a physical barrier. Sex became much less frequent, and was burdened by worry and frustration.

In time, and with the help of an outstanding physician, my partner’s viral load became undetectable. In the meantime, both of us had educated ourselves on HIV. We knew that a Swiss study indicated that the risk of my being infected by my partner was now extremely low (due to his undetectable viral load), even to the point that some physicians in Switzerland believed protection was unnecessary.

My partner was able to relax more, and we began to settle into the “new normal” of being a serodiscordant couple.
Even at this stage, however, there were emotional challenges.

I still hated using condoms, and I still wanted to feel my partner inside me. 

I felt the risk was low enough to be acceptable, and a selfish part of me wanted to be the one making the decision on whether to use protection. Another part of me knew, deep down, that by encouraging unprotected sex with my partner, I wasn’t giving my partner’s emotional well-being the importance he deserved. All too often, I placed my partner in the difficult position of wanting to protect me from infection, while at the same time wanting to satisfy my desire for sex without physical barriers. When my partner gave in to my preference, he generally pulled out before ejaculating, but afterward he dealt with understandable worry. The combination of anxiety and infrequency continued to wear on our relationship.

Somewhere in the midst of all this, I reached a state of mind that seems almost universal among HIV negative partners of HIV positive men.

As low as the risk of infection seemed to be, I still had a nagging worry that I might become positive.

I hated using condoms. I hated seeing my partner constantly worry about infecting me. I worried that my partner would grow so tired of that worry that he might choose to leave the relationship in pursuit of an HIV positive partner. I resented that at times, my partner seemed more comfortable having sex with another HIV positive man than with me. None of these feelings were particularly rational, but they existed.

In keeping with that irrationality, I felt what so many HIV negative men in serodiscordant relationships feel. In a very real sense, part of me wished that I would become infected, just so the whole issue would “go away.” What seemed like a “manageable condition” with new medications seemed preferable to the ongoing stress and frustration. In time, and with seeing the physical problems my partner suffered as a result of his HIV infection, I got past that stage. Unfortunately, many HIV negative men in serodiscordant relationships seem to go through that stage, and some don’t to their senses before permanently affecting their health.

We gradually settled into a “serodiscordant detente,” in which my partner reluctantly agreed that it was up to me whether I wanted to take the risks inherent in unprotected sex, but he almost always pulled out before ejaculation.

At times, I selfishly prevented the latter from happening, not considering the stress I was causing him. There was no simple solution, so while we could still have great sex, it was always accompanied by some level of anxiety and guilt. We were handling it imperfectly, but perhaps the best we could at the time.

Then came November of 2010, and the New England Journal of Medicine’s publication of a study showing the effectiveness of PrEP for men who have sex with men. Our physician, a true expert in the field of HIV prevention and treatment, was familiar with the study prior to its publication. Once results were published, he had a frank discussion with my partner about our sexual activities (something like “Don’t lie to me, I have a really big needle that I can jab you with if you’re lying”). Because we have a great deal of trust in our doctor, my partner was honest with him about our behaviors. Based on that discussion, our doctor asked me to visit him and discuss the possibility of taking PrEP. I made an appointment for a week later.

In the meantime, I agonized over the issue. I searched the Internet and read everything I could find on the subject, both for and against PrEP. In particular, I carefully read the actual study report in the New England Journal of Medicine. I made notes of the questions raised in my mind, and brought them with me when I visited my doctor. We discussed my questions thoroughly, along with the fact that I already had a recent HIV test establishing that I was still negative. My doctor outlined the requirement that I would take the medication every day as directed, and that he would test me for kidney function and other potential side effects on a regular basis. In the end, I decided that the benefits outweighed the risks, and I chose to begin taking Truvada.

The cost of PrEP is naturally a major factor. My physician informed me that several insurance companies were actively considering coverage of PrEP, knowing that it was much less expensive than treatment of an HIV positive patient. Fortunately, my health insurance company had already chosen to cover PrEP, and I’ve never had a problem obtaining Truvada with a reasonable copay.

Perhaps the second most common question I’m asked is whether I’ve had side effects from using PrEP. It’s true that for some men, Truvada can cause nausea or diarrhea (usually only for the first month of use), or even kidney damage. I’m pleased to say that I haven’t experienced such problems. I take my medication every night. The first morning after I began taking Truvada, I had some very minor diarrhea, but this has never recurred, so it may have been entirely coincidental. True to his word, my physician has insisted on regular tests to monitor my kidney function, HIV status, and other health measures. My test results have been entirely normal.

In fact, the only “side effect” I’ve experienced while using PrEP is frustration over the anti-PrEP propaganda efforts of Michael Weinstein and his AIDS Healthcare Foundation.

I’ve read a great deal of the material issued by Mr. Weinstein, and I recently participated with him in a public forum on the use of PrEP, along with several committed advocates of HIV prevention. Where experts presented factual data regarding PrEP, Mr. Weinstein attempted to inspire fear of PrEP, and advocate against the makers of Truvada. Mr. Weinstein’s fear-mongering should come as no surprise, given that he previously attempted to sue the makers of Viagra, claiming that the erectile dysfunction drug contributed to the spread of HIV.

Mr. Weinstein consistently misrepresents the study data. First, he claims that PrEP only proved to be 44% effective in preventing HIV infection. He avoids stating that closer examination of the study results shows that those in the study group who became infected with HIV were found to have no Truvada in their bloodstream, or only trace levels. In other words, the infected individuals failed to actually take Truvada daily as directed. None of the men who were found to actually be taking Truvada on a daily basis throughout the study became infected with HIV.

Second, Mr. Weinstein complains that the study wasn’t “real world,” because those enrolled received monthly prevention counseling and health monitoring. To Mr. Weinstein, it was really the counseling that prevented infection, rather than PrEP. What Mr. Weinstein fails to recognize is that all study participants, including those taking a placebo, were given the same counseling and monitoring. In other words, the controlled study took this factor into account, so that the use of PrEP would truly be the only difference between the groups. When the study reports that PrEP was effective in reducing HIV infections, it reflects a situation in which all other factors were equal. For the men taking placebo, counseling alone didn’t protect them from HIV infection.

Perhaps knowing that consistent, daily use of PrEP really did prevent HIV infection, Mr. Weinstein insists that gay men cannot be relied upon to take Truvada daily. Mr. Weinstein doesn’t explain why he believes that the same men who can’t be trusted to take a pill every day can be expected to use a condom every time they have sex (the only prevention method he seems to approve).

My own anecdotal experience contradicts Mr. Weinstein’s theory. I take my Truvada every night before bed. In the five months I’ve been taking the drug, I’ve forgotten only once, and I took it the following morning, making it a “late” dose, rather than a “missed” dose. I’m not always the most responsible person on the planet, but I take my medication as directed, because I realize that as part of a serodiscordant relationship, I have a comparatively high risk of infection. I take my medication as directed, because I have an excellent physician who reminds me about how important that is.

I take my medication as directed, because I love my partner, and knowing that I take PrEP daily helps reduce his worry and stress. 

Mr. Weinstein complains that the availability of PrEP will make men less likely to use condoms, thus making them less protected against HIV infection. While I can’t deny that this may occur for some men, my own experience reflects quite differently. While my partner has an undetectable viral load, resulting in a less than 1% chance of him infecting me, that chance continues to exist. Before PrEP became available, I was taking a calculated risk with my partner, because even with counseling from my trusted physician, physical comfort and intimacy without barriers were ultimately more important to me than further reducing that tiny 1%. My physician, having directly asked about this, determined that I was a good candidate for a method that would overcome those objections.

PrEP didn’t make me stop using condoms.

Instead PrEP provided me with protection that I would use consistently, rather than protection that I was already rejecting. With PrEP, that 1% risk of infection from my partner’s undetectable viral load has been further reduced by my own level of personal protection (92% for those who use PrEP daily).

In the end, my belief that the benefits of PrEP would outweigh the risks has proven true for me. I’m carefully monitored to ensure that I don’t develop harmful side effects. I comply with the treatment regimen faithfully. My insurance covers the medication. My overall level of protection against HIV infection has increased dramatically. Just as importantly, however, PrEP has made a real difference in my relationship with my partner. We’re able to be intimate in a way both of us prefer, without the fears and conflicting feelings that were present even with condoms.

I haven’t “given up on gay men,” or deemed my life “disposable.”

Rather, I’ve made a responsible health choice that works for me, and I’m happy with it.

Nick Literski
Seattle, WA

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  1. The 44% effectiveness result is not a misrepresentation of the study. It is the result of the study as described both in the paper in the NEJM and by its principal investigator.

    On the other hand, it is a misrepresentation of the study to say that "None of the men who were found to actually be taking Truvada on a daily basis throughout the study became infected with HIV." because this information is a) not known (nobody know who took and who did not take the drug dayly) b) people may simply not have been exposed to HIV.

    Therefore it is also inacurate to say that those who take the drug daily had a 92% reduction in being infected (that figure comes form a substudy which is not a clinical trial, nor representative of the trial). The iPrEX trial was not comparing dayly dosage versus non dayly which would have been the only way to reach obstain such figure).

    Your testimony is powerful enough without misrepresenting what the study showed and did not show.

  2. I appreciate your thoughts, "Anonymous," but I can't say that I completely agree. Reading the full study in the NEJM, including the footnotes, provides much more information than the "44%" condemned by Weinstein. Additional articles have also come forth (some linked at this blog) with useful observations and details of the study. Since the subjects were given blood tests to check the level of Truvada in their systems, it's not accurate to say that "nobody knew who did not take the drug daily." As for your theory that none of the men taking the drug were exposed to HIV, the same could be said for a study which was specifically targeted to compare dosage regimens. Keep in mind, however, that the study was explicitly limited to subjects who were considered "high risk" for infection.

    There is undoubtably much more to learn on this topic, but "44%" is certainly not the entire story.

  3. Nick, many thanks for your well-written, articulate account of the challenges (to put it mildly) a sero-discordant couple face. While the issue focused on is PrEP, your article goes well beyond that by touching upon so many attendant issues that we collectively tend to downplay or ignore.

  4. What a wonderfully provocative, informative and personal story. Thank you so much for sharing your life, love and thoughts. Personally, I am thinking that PrEP is a viable tool to offer gay men, particularly gay men like yourself who are committed to your health and informed of the risks--and able to see a doc for regular tests.

    But are you a good representation of most gay men? (I wish you were, but alas you're not!) A question then is, Is PrEP appropriate for people who are less informed, disciplined and introspective? Is it appropriate/safe to market it to people unlike yourself--what are those risks?

    Again, thank you for sharing such personal insight--best of luck to you and your partner(s)!!

  5. Excellent questions, Anonymous #2! The CDC interim guidance on PrEP places responsibility on physicians to evaluate candidates for PrEP carefully. I wish I could clone the physician who cares for my partner and me, as he's been outstanding.

  6. diego de la nocheMay 5, 2011 at 1:06 PM

    just want to thank you for this very personal, very thoughtful piece... i've been hearing a lot of stuff about prep from all kinds of people - and not til now from someone who is actually taking it... i don't know if i would make the same choices, or not, but i do appreciate the way you describe how you got to where you are going. thank you again nick :)

  7. Nick,

    Thank you for this. My name is Aaron Stella. I'm a 25-year-old poz gay man living in Philadelphia. I was unfamiliar with this study until now; finally, I have something I can offer as an option to my future neg partners, as I'm not sold on singularly dating other poz men.

    In addition to being the Editor-in-Chief for an Arts and Entertainment publication in Philadelphia, call Phillybroadcaster (, I've recently begun writing an HIV column in the Philly Gay News. I cold pitched the idea to them when I saw that they, being one of the oldest gay publications on the planet, had no columnist for HIV. Here's a link to my first article (it's new enough that a second one hasn't come out yet):

    In the same way that you're educating people, I'm trying to do the same, if but merely by being young and totally public about my status, and trying to instigate an informed dialogue about HIV in Philadelphia. A lot of young people don't know the facts nor how to talk about it, which is, ironically, in part because of the new and effective meds, rendering fear of death second fiddle to HIV's stigma.

    In any case, thank for you this contribution to educating people on the facts of new research and medications options. I'm going to send this article to someone who I'm dating now. He is negative, but loves me very much and is determined to have a healthy sexual life with me.

    With much love, Aaron.

    P.S: in case you'd ever like to talk (i don't care if I give out my email address) email me here:

  8. Excellent piece and should be distributed a lot more widely. I'd suggest you pitch it to POZ.


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