Your Experience is a Gift

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Saturday, June 9, 2012

Trying to Get Pregnant and Thankful for PrEP

by an HIV-negative spouse

I've been married to my HIV+ husband for over ten years.

A few years ago we decided we wanted to try to get pregnant.

After years of researching and many disappointments, we decided to try to conceive naturally. Luckily, I had a doctor that was willing to work with us, who respected our choices, and wanted to do whatever she could to mitigate my risks.

She prescribed me Truvada. I began taking it for a month before my husband and I had unprotected sex, and after about two years of trying...we are still not pregnant, but I remain negative.

I realize our choices are risky, but there are not many realistic options for couples in our position who want to conceive. Sure, there are fertility treatments, we looked in to them all, not one fertility treatment option worked for us for one reason or another.

Taking the Truvada does not make me "reckless" in my decision to have unprotected sex, it makes me feel supported by a community of doctors and advocates, who recognize the nuances of my situation, and are doing all they can to help me stay negative.

I understand the risks I'm taking. I don't minimize them just because I'm using Truvada.

It is frustrating to hear experts say that prescribing Truvada to someone could give them an unrealistic sense of safety from becoming HIV+. I'm sure that's true for some...but judging from my own REAL (not hypothetical) experience, it makes me more aware of the risks I'm taking. I am reminded of those risks on a daily basis, every time I open that bottle and swallow that blue pill. I don't take them lightly. If I did, I wouldn't go through the trouble of using Truvada.

I've jumped a lot of hurdles to get to this place....through legislative changes, doctors with unbelievable and blatant prejudice, and all the disappointments that go with failing to conceive.

What has angered me the most, is watching and listening to doctors, politicians, and experts decide what my choices and risks should be.  For most of them, it is their job. But for is my life.

Their opinions and decisions trickle down to impact my life in very real ways. From not being able to utilize certain fertility treatments because the Center for Disease Control won't establish guidelines, (even though I am legally entitled to those treatments), to walking past the baby apparel section at the store, to seeing that negative pregnancy test every month.

With all the complications and legal limitations of our situation, I am thankful for the opportunity to use Truvada. For now, it is my only option. And I think its a good one.

To read more about my journey, check out my blog (HIV negative spouses.)

Wednesday, May 30, 2012

The New Frontier

Prevention, PrEP, the whole damn thing — it all boils down to the human impulse to have sex without condoms. Thirty years into an epidemic, that’s still hard to talk about in public without hysteria and morality.

by anon, San Franciso
[name withheld for now]

I have been taking Truvada for two months. 

I’m 39, HIV-negative, and have been sexually active with men since I was 13 years old. So that’s 26 years of condoms, anxiety about HIV and navigating safety with several thousand partners. I’ve been a sex worker for 14 years and in my free time, a sexual enthusiast who loves bathhouses, online hookups and sex clubs. I’m versatile and attracted to a range of men. 

In other words, I’m a good candidate for PrEP.

I’ve remained HIV negative with a combination of fear, will power, good boy training, strategic partner selection and three rounds of post-exposure medication.

Over the years, I’ve realized that most of the prevention messages were wrong: that HIV is not orally transmitted, that HIV is much harder to get for tops, that by and large it’s a fragile virus. These are all things that HIV counselors and prevention campaigns lied to me and my community about by using fear, shaming and millions of dollars. In order to get an HIV test, I would have to go to the principal’s office and take a pop quiz about the five transmissible body fluids and get a finger wagging for the unprotected sex I’d had, which I grossly underestimated in our counseling session.

Fear, for most people, is a short-term deterrent. It’s like crack and it wears off.

HIV prevention, like most American entities, has failed to adopt tactics that are sustainable in the long term to keep people uninfected.

As I learned the truth about HIV (by becoming an HIV counselor myself and working with young street-based injectors) I started taking more risks myself. At a certain point, I felt like my risk tolerance had the potential to get me infected. So I spent a lot of time considering PrEP. I spoke to doctors, friends working at all levels of prevention and poz men on Truvada. I read up on it and finally decided to try it.

I offer these caveats because contrary to government and mental health industry perceptions, I am not suicidal and if there is a problem with my self-esteem, it’s that I have too much of it.

My doctor is a gay man in the Castro who has a lot of patients on PrEP. He treated me with respect, as if my personal research could be helpful to him.

The sex I’ve had in the last two months has been some of the most spiritual, connected and passionate sex I’ve ever had. The persistent anxiety I’ve lived with for so many years is gone.

I have not been using condoms as a top or bottom and have been playing mostly with undetectable HIV positive men. Ironically, undetectable men have emerged as the safest group of people for me to play with. HIV negative men, especially versatile ones, stand the chance of having newly seroconverted with high viral loads. So I’m thoughtful about it. I’m ruling out anyone who does crystal meth. Barebacking and online hookup websites, oft-demonized, are excellent for starting conversations about health and serostatus because people include status and sexual practices in their profile.

Some of you may want to scream BUT PEOPLE LIE! Sure. Sure they do. 

Wednesday, May 23, 2012

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

by Nick Literski, Seattle

[This story was first published in May, 2011 - and became the inspiration for the "My PrEP Experience" series on the gay men's health blog called LifeLube, sharing the real stories of people who have chosen to use PrEP. This re-published post officially launches "My PrEP Experience" as it's very own blog today. Just this week on May 21, Nick and his partner were featured in an ABC news story about Truvada as PrEP titled "Truvada Helps Couple Cope With Reality of Love and HIV."]

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.


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