May 13, 2013
As a licensed therapist working with people living with HIV, Damon Jacobs heard about pre-exposure prophylaxis (PrEP) as an HIV prevention strategy. When he found himself newly single after being out of the dating game for almost a decade, he re-entered a dating pool that was not at all condom-friendly. To deal with this, and to finally come to terms with his distaste for condoms, Damon began taking PrEP in July 2011 to stay HIV negative.
Now, almost two years later, he's never missed a single dose -- and he's become an advocate for education around PrEP, though he acknowledges that it may not be the right strategy for everyone. From dispelling myths around anti-condom attitudes to advocating that people be able to talk to their doctors about all aspects of their sex life, Damon reminds us that sex isn't dirty, and we can have sexual pleasure, but we have to be smart and know our own bodies.
Can you tell us a bit about your background and experience in the HIV community?
I'm a licensed marriage/ family therapist in New York state. I'm also licensed in California. That means that I work with people in relationships. Sometimes I work with couples in the room. Sometimes I work with individuals who are in couples.
I was getting my formative education and training in psychology in the San Francisco Bay Area in the mid-early 1990s, in the early days of HIV/AIDS -- or, actually, it was after the first wave. That was a time when loving people with AIDS and knowing people with AIDS meant losing people with AIDS. You would see people one day and then the next day, you wouldn't see them. That was before we had treatments. And that really affected a lot of the way that I continued to want to be active in the HIV prevention, education and treatment community -- also as a therapist, as someone who could help people infected and affected by HIV to have lives that were still meaningful and purposeful and pleasure-filled.
That's really been the mission that I've had for the past 15 to 20 years, is trying to promote a sense of empowerment, and mental and spiritual health for people infected and affected with HIV -- people that are, often, in relationships with other people who are HIV positive, and a lot of serodiscordant relationships (meaning that one person is negative, one person is positive) -- and helping them negotiate the boundaries and agreements and how they discuss issues around sexuality, around sexual expression.
When was the first time that you remember hearing about PrEP?
The first that I remember hearing about PrEP was actually around Thanksgiving, the day before Thanksgiving, of 2010. I try to keep up with the latest research, and I had just heard about this study. I didn't really know anything about it. I just heard that there was this study called "I-Something." I thought it was like an Apple computer or something, because it was called the "iPrEx study." I heard about some sort of pill that could potentially prevent someone who was negative from becoming positive. And I thought, "Well, that could be interesting." Then I didn't really think any much more about it for another six months.
During those six months, a long-term relationship of mine was coming to an end, and I was getting back into the dating world. Also, the cruising world. I realized that in the seven years that had passed since I was last single, a few things had changed. For one thing, the partners I was meeting had a very different attitude around condoms than they had had in the early 2000s. They didn't want to use condoms. And to be honest with you, there were times I didn't want them to use condoms, either. For the very first time in my life, I was in this confusing state of, "Wait a second, I've been this prevention advocate about condoms and lube for all these years. And here I am, not exactly holding myself to the same standards."
So, I heard about this information session about PrEP that was going to be happening at GMHC in about June of 2011. And I thought, "Well, I just want to know more about this." I didn't think it was going to apply to me in any way. But when I got there, there were some of the researchers and some community advocates that were sharing the information that was available. And when I heard the researchers say that the variable aspects of efficacy in the iPrEx study ranged from 44 percent and 90 percent ... well, 44 percent wasn't going to sell me. I wasn't going to play that game. But when I heard that it was 90 percent amongst participants in the study who actually took the medication consistently, between 90 and 92 percent, that's when my ears perked up. I was like, "Wait a second, maybe this is something for me. Maybe this is something that would not only positively impact the people who I work with and my friends and my clients, but maybe this is something I would benefit from." Again, I was having a much more difficult time maintaining the consistent use of condoms than I had had before. Realizing that there could be a medication that could actually assist me in maintaining my HIV-negative status by about 90 to 92 percent made me want to learn more about it.
I talked to the researchers, and I got some of their information after this event at GMHC. I then learned more about the iPrEx study, and by that point the CDC (U.S. Centers for Disease Control and Prevention) had a page on their website for doctors to go to if they wanted to prescribe this as an off-label medication, because it was not yet approved by the FDA (U.S. Food and Drug Administration) at this point. It would still be a year away before the FDA would approve it. But there was still plenty of information about the iPrEx study and information and guidelines for doctors -- even in 2011.
So, I printed all that out, took it to my doctor, who I have a very good relationship with, and said, "Look, this is what I'm learning. This is what the research is saying. And, I'm having a harder time in my early 40s staying safe than I ever had in my 20s or 30s. I think this might be the right thing for me." He looked it over, he thought about it, and said, "Yep, I agree with you." That's when I started PrEP. I started July 19, 2011, and I've not missed a single dose since. We are now in March of 2013.
What I've since learned and what I've become more knowledgeable of, what we've become more aware of, in the time since the iPrEx study, is that the participants who took Truvada (tenofovir/FTC) seven days a week -- who did not miss a dose -- appeared to be 99 percent less likely to contract HIV. The original estimate that they were putting out there was around 90 to 92 percent. Maybe it was always known, or that knowledge was not made readily available, that that subsection of the 2,500 participants who took this seven days a week appear to be 99 percent less likely to get HIV.
Now, condoms, which I've relied upon to stay negative, despite having positive partners, despite having positive boyfriends, which I always have, those are about 98 percent effective. So I knew when I was being sexually intimate with a positive partner with condoms and lube, there was 98 percent protection, and I could work with that. With PrEP now, with 99 percent efficacy -- if taken everyday -- wow. Wow. Revolutionary.
It confuses me why more people don't know about this. It may not be the right decision for everybody. For me, I really had to think about it from a medical perspective. From an emotional, sexual perspective, I had to think whether this was the right choice for me or not. But, the fact is, it has been approved by the FDA for this use since July 16, 2012. And the majority of the people I know, the majority of the people I talk to, don't even know it exists, much less that it has been approved -- and that many insurance companies pay for it. It baffles me how we can have such an effective tool in the fight against HIV and so little information out there about it.
Can you tell us about your PrEP regimen? How do you remember to take your pill, and when do you take it?
I have a pretty consistent routine, and I always have. Well, not always, but as long as I've been health conscious. I take vitamins. I'm not a health food nut; to be honest with you, I hate healthy food. I live off pizza. That's the thing. But, I take multivitamins. I take multivitamins that are rich with all these dried-up vegetables; they come from a special farm in Wisconsin. They're really good for you. So, that's really an important part for me, is to maintain a vitamin regimen and to eat breakfast every single day. Which is another thing we often do, all of us do, to neglect our self-care. It's so important. And I drink coffee. So, I wake up; I have my breakfast; I have my vitamins; I have my coffee. That was already an established routine in my adult life. Those are important things I do to take care of myself and start the day right. PrEP was just one thing to add into that. It wasn't anything that was inconvenient. It hasn't been something I've forgotten. It's just with the vitamins now. It's on the same little thing that the vitamins sit on, so I don't forget.
Did you feel that you had to go through a Truvada "coming-out process" where you had to tell people in your life that you were making a decision to go on PrEP? I mean friends and family, not sexual partners.
Who likes to talk about anal sex with their friends and family? I mean, I kinda do, because that's the field I work in, and those of us who work in the HIV field often do anyway. Nevertheless, it's not always a common conversation that you have at the dinner table with your parents. And before it was approved, honestly, I was concerned about talking about it. I was concerned that my insurance would cease supporting this if I was open about it. The shift in me now telling my friends and family and trying to get the word out there is because the FDA did approve it. It's all on the record with the insurance companies.
So, yes, it was weird. I had to explain this to my parents before talking about this publicly, because I'm friends with my mom on Facebook, and I thought that, quite possibly, she's going to see some of my shenanigans. So, I explained to them, "If I was a woman and I told you I wanted to take birth control pills, would you support me?" And my parents were like, "Yeah, we'd support you on that." Then I said, "Well, if I told you that there was a pill that could actually prevent me from becoming HIV positive by almost 99 percent, would you support me on that?" And they said, "Why would you need that?" Ugh, not what you want to hear. So, basically, I explained to them the idea of oral prophylactics, of prevention, of responsibility, of prioritizing my mind, my body, my spirit. That's consistent with the work I've always done, both personally and professionally. And this was very much in alignment with that. That they got; that they understood.
The other thing with friends is just that people don't believe it -- because there's so little information out there, because this has not really been covered very much. So, the friends I told about this, they didn't disapprove, they were just scared. They didn't really believe that this works. They didn't think this was real. They just thought I was going out and being self-destructive. They don't think that now, but in the beginning when I was starting to talk about this, my friends were concerned that I was on this binge of self-destructive, hedonistic, bug-seeking anarchy. And didn't really understand. So again, I did my best to show them the research, show them the data that were out there. Explain to them that this was being done with a doctor. Time has shown that, OK, we're on the right path here. We know what we're doing.
How do you broach the subject of PrEP with potential sexual partners? Do you feel like you can say, "Oh, it's OK, I'm on a pill." Run us through that whole song and dance.
Well, as I said, dating in 2013 is really different from 2003, and one of the biggest differences is that the condom conversation doesn't happen half of the time. In San Francisco in the 1990s, there was no treatment, and half of the men in San Francisco were positive. So, it was pretty much a given that, if I was going to be sexually active, that 50 percent of the people I was going to meet were going to be positive. So I just assumed everyone was positive, regardless of what they told me, and acted accordingly. But there was often a conversation; there was some acknowledgement that a condom was being used.
A lot of guys don't use condoms and don't talk about condoms. Now, from an education, from a prevention standpoint, that's terrifying! But it's also for real. But to answer your question, it doesn't always come up. The conversation doesn't always happen.
When I am with a partner, or if I'm dating someone who is positive, they will tell me that they're positive, and I will tell them about PrEP, and sometimes the response is "Phew! Good!" And other times, the response will be, "Well, we're still using condoms, because never in a million years would I knowingly put someone at risk for HIV. I just won't do that. That's not my principle." And that's a response I often get from the positive community. Here's what I say: "All right, cool, I understand. But here's what I also want you to consider. Daily use of PrEP has been shown consistently in different research studies to be 99 percent effective in preventing HIV. Daily use of antiretrovirals by someone who is positive has been shown to be about 96 percent effective in reducing the transmission of HIV. On my side, I've got 99 percent protection, on your side, you've got 96 percent protection. The likelihood that I will be getting HIV from you at this point in time is pretty miniscule."
But, to be political on another subject, when you look at the escalation of gun violence in this country, and you see that about 30 murders a day are happening in America in which people are being killed by guns, I feel like the likelihood of me getting shot right now is higher than the likelihood of me becoming HIV positive with those odds. So, I put it like that to partners and then I say, "So, what do you think?" Sometimes, they say, "Nope, I still will not have sex without condoms." And there are people who are like, "OK, I see where you're coming from. Let's get busy." And I respect people's right to use condoms. Which is one of the biggest misconceptions about people who take PrEP. We're not the anti-condom police.
They think that you're the "barebacking brigade"?
Radical barebacking brigade! On the streets! We're talking about PrEP as one strategy to prevent HIV, not the strategy to prevent HIV. It is one strategy to prevent HIV. Along with condoms, along with positive people knowing that they're positive and taking antiretrovirals so that they cannot give HIV to another person. It has been an opportunity for people in serodiscordant relationships, including myself, to experience more intimacy and more pleasure than ever before in the 32 years of this thing called AIDS. And I, honestly, didn't know if I would ever see that in my lifetime. I really didn't think I would ever see that in my lifetime, to be honest with you. It's really been a revelation in that way. So, to answer your question, sometimes I talk about it, sometimes I don't.
Does the condom conversation ever come up around STIs (sexually transmitted infections) other than HIV, since PrEP only protects against HIV? Or do people just not talk about it?
I'm telling you from my experience: People are not talking about HIV and they are definitely not talking about STIs. I'm not saying that's good. I'm not saying that's right. I'm not saying that's healthy. I'm just saying that's the reality of many hookups and of many of the conversations, or lack of conversations, out there.
This is why it is so so so important for people to have medical care with a doctor who they trust, who they respect. I always say, "If you can't talk to your doctor about getting fucked up the ass, then you have the wrong doctor!" You need to have a doctor who you trust. If you feel judged or criticized or condemned by your doctor because you have a healthy sex life or a sex drive, find a doctor who you trust. They are out there. In some areas they are easy to find, and in some areas they are not so easy to find.
You are a consumer. Not the patient. You are a consumer. That's a very different paradigm. Because a "patient" is passive, and just has to do what the doctor tells them do. A "consumer" can say, "If you don't treat me with a certain level of respect, and if you don't engage in a sophisticated, adult, respectful conversation with me about anal sex, then I, as a consumer, can go to somebody else who is willing and able to do that with me." That's the reason we have to have really positive relationships with the medical community, because part of taking PrEP is that it's so important to see your doctor consistently, have your blood drawn consistently, and get tested for other STIs, because PrEP does not offer ANY protection against syphilis, gonorrhea, herpes, all that fun stuff. There's no protection there. So, I do get my blood and urine drawn from my doctor every three months to screen for that.
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.
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, firstname.lastname@example.org, 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.
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.