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This PrEP-ed Life: Damon Jacobs on Sex and Dating in a New Era of HIV Prevention

May 13, 2013

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If someone were to come up to you and ask you, "Hey, who should be in the conversation about PrEP?," what groups would you name?

We know, statistically speaking, that there are about 50,000 new infections in the United States every year. For those of us who want to champion prevention efforts, I think we did a great job in the '90s of bringing down new infections. I used to stand on the corner of Sanchez and Market in San Francisco with those pins that said "100%" and give out condoms and lube and pins, because the message was "100 percent condoms and lube all the time!" Not fully understanding at that time how we were inadvertently creating a shame around those people who didn't use condoms and lube all the time, and kind of making their voices silent.

But, I will say this: If you look at the infection rates during the '90s and the early 2000s in this country, they continued to decline until 2004. Since 2004, almost the last 10 years, it's been about 50,000. So, who are these 50,000 people? In New York City, it's overwhelming black gay and bisexual men between the ages of 18 and 25. These are the group of people that are testing newly positive most frequently in New York, and I think that's also occurring in major urban areas across the United States. This is the population that needs to know about this. It's important that 40-year-old white guys know about it too -- like me! It's really important that everybody knows about it, but especially to help the message get into the communities where HIV is being transmitted at the highest rate.

Fifty thousand new infections in this country is 50,000 too many, especially now that we have a new, effective prophylactic prevention tool. There's no need to have 50,000 new infections in this country. There's no need to have 25,000 new infections in this country. But what if we could at LEAST reduce the number of infections by 50 percent? Wow. Wouldn't that be something? Well, you know something? PrEP, even when taken inconsistently, has been shown to be 44 percent effective. Even with people who took it once or twice a week. Forty-four percent is not enough, but it's still more than what we've had for the last decade. It's more than what just condoms and lube are doing if they're not used. So, I would say that anyone who is sexually active right now -- regardless of age, regardless of gender -- because we're also seeing a lot of new, I don't think it's that many, but there's always been a subsection of men who are in their 50s who did survive that first wave of HIV/AIDS, survived it as HIV negative, and experience something called condom fatigue. Or just think "Screw it" or "Hey, the meds are out there" or "At this point in my life, I'm going to die from something else, so why not, who cares about HIV." That's also the group who needs to know that there is a non-latex alternative to safer sex. So, it needs to be out there for people who are on Grindr, on any of those cruising websites, and are hooking up, and are not using condoms 100 percent of the time. We simply do not have any reason for the infection rates in this country to continue to be that high.

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Have you had any personal medical side effects from taking PrEP?

Not a thing. I would not even know I'm taking it, except it's a little blue pill that I take every day. No nausea, no nothing. My doctor is monitoring my blood to see if there are any side effects that I can't anticipate, that I couldn't feel, like kidney impairment or bone density reduction. Knock on wood, so far, so good. I personally have no side effects.

How would you recommend someone start the conversation about PrEP with their doctor?

Bring information with you. The great thing is that now the FDA did approve it. So there's so much official information -- FDA, CDC stuff, the stuff that's on TheBody.com -- there's a lot of really credible websites now that have valid, intelligent information about PrEP.

Talk about the research side. That's what doctors want to know, for the most part. Some of them may say, "That all sounds good, but I don't want to give you a prescription to go out and get HIV." And you say, "Oh, but look, I've actually found out -- study after study -- that if I take this seven days a week, I can be 99 percent protected from HIV. I'm not saying I'm going to go out there and get exposed to HIV." I've even said go and ask your doctor, "What if there was a vaccine for HIV? Would you ask your doctor for a vaccine if that was available? Well, we don't have a vaccine, but we do have something that's 99 percent effective until we do have a vaccine." Or I often say to gay men, "Think about if you were a woman: How would you approach your doctor about taking birth control pills?" The idea is, you can have sex for pleasure without adverse consequences.

Most of us grew up in a sex-negative paradigm, meaning -- especially for gay men -- there's a part of our brain that has internalized, "Sex is bad. Sex is dirty. Sex is embarrassing. Sex is shameful. I 'shouldn't' have these desires. And if I do feel these desires, then it's kind of wrong to feel good about them, or to talk about them." What I try to do is to get people to get around that and talk about sex as an affirmative, healthy activity that people can do. It can be done with respect, it can be a physically gratifying experience, it can be a spiritually gratifying experience, and there's nothing to be embarrassed about for enjoying that.

So know that. Own that. And take the data to your doctor and have a conversation. She or he may need some time to digest all that. They may not have heard of it. If you are the first patient or the first consumer to come to them and say, "Hey, I want this," they might need to digest that a little bit. They might need to look through some of your research or they might need to do some research of their own. They might need to do some consultations with some colleagues. Let them have that. They might need a few weeks. That's OK. But then, follow up, and find out. And if they're not going to support this, you don't have to continue to see them.

Now, all that being said, there may be medical reasons they don't agree with you taking PrEP. If you have certain medical conditions that could make you more susceptible to kidney failure or bone density reduction, your doctor may not advocate for this on medical grounds. But that's different from moral grounds. So I would say be clear in your heart, be clear in your mind, about asking for something that will empower your body, your mind, your spirit. That will keep you healthy in the long run, and don't be ashamed of asking for that.

Have you gotten any negative reactions from any communities about taking PrEP, and if so, how have you dealt with them?

The only negative feedback I've gotten has been when I've done something public or gone on a website or done some kind of presentation where it was on the Web and people would leave comments. These are the kind of websites where anything you put there's going to be negative comments, so I don't even read them to be honest with you. Those are anonymous; they're indirect.

The only negative response I've gotten has been from a specific service organization that has been publicly opposed to this -- that, for their own reasons, which I don't fully comprehend, don't think that it's wise for people to have the education and the information and the tools to keep themselves safe and HIV negative. I can't explain their motivations -- only they can -- and when they try, it makes no sense to me anyway. That's really the only negative feedback I've gotten.

You might be able to tell, I'm a pretty independent thinker. I've kind of always been headstrong and stubborn and done things my own weird way. So, people who know me already kinda know that this is Damon's life, and comments are not solicited. Friends and family who know me have expressed concern and I understand that and I respect that. But no one has come at me with a sex-negative "should" about this.

Is there anything else you want to say to our readers about PrEP? Something you want to touch on?

I certainly hope this makes people think about what's right for them. It's not up to me to tell anybody what's right for them. But if people want to know more, they're welcome to contact me at my email, shouldless@gmail.com, or contact TheBody.com, or contact your local HIV/AIDS resource organization. Ask more questions. Ask me questions. I don't know everything, but if I don't know, I'm happy to help people get the answers.

"This is not a drug that can be taken casually. This is not a medication you start, stop, start, and stop. This is not a Fire Island weekend party drug. This is my concern about PrEP. This is my worry. That is where there is danger for resistance to come in."

But here's the most important thing! This is not a drug that can be taken casually. This is not a medication you start, stop, start, and stop. This is not a Fire Island weekend party drug. This is my concern about PrEP. This is my worry. That is where there is danger for resistance to come in, and I'll explain what that means. What happens with Truvada in HIV-positive people is that Truvada is used in combination with other meds to keep the viral load down to zero, so that someone who is HIV positive can have a long quality and quantity of life. Truvada is used with other meds to make that happen. And so, in someone who is negative, Truvada is used alone. Truvada is the only medication.

What happens is, if someone is HIV positive and starts Truvada alone without other medications, their body can build resistance to Truvada. Let me say that again -- if they don't know they're positive and they start Truvada alone without taking it in combination with other meds, they can build resistance to Truvada. So, someone may think, big deal, who cares, there are 20 million meds out there. The big deal is that the most effective HIV meds on the market and all of those one-pill-a-days contain an element of Truvada in them. So, if you are resistant to Truvada, you are taking a lot of medicines off the shelf that can't help you if you are positive.

This is the danger. This is why it has to be done in tandem with a doctor, with a medical professional. Because what your doctor will do is first make sure that you are HIV negative. That you are not positive. But, today's Thursday, if I'm positive and I don't know it, and I'm like, "Party weekend! Black party! I'm going! I've got my Truvada, I'm ready!" If I take it without knowing I'm positive, then I might build resistance to Truvada and it's going to make the possibility of living a long, healthy, satisfying life as a positive person much more challenging.

So this is what people need to know. Take it with a doctor. Make sure you are HIV negative first. And do not take this sporadically as a party drug. Because that's where people can get in trouble.

This transcript has been lightly edited for clarity.

Mathew Rodriguez is the editorial project manager for TheBody.com and TheBodyPRO.com.

Follow Mathew on Twitter: @mathewrodriguez.


Copyright © 2013 Remedy Health Media, LLC. All rights reserved.
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