June 3, 2013
If you have seen an 18-wheel truck with a huge condom on the side driving through your town, then you may have seen Marco Benjamin. Diagnosed with HIV at 27 while working at an architectural firm, Marco left that job within a year to pursue a life of HIV activism, and hasn't looked back since.
Marco found out he was HIV positive when his then-boyfriend tested him at home. Soon after, he learned that he was considered an HIV "nonprogressor," and was advised by his doctors not to start treatment, though he was not in agreement at first. In this interview, Marco discusses how lucky he is to have a supportive family, why he thinks stigma isn't going to go away any time soon, and how preventing HIV transmission should always be a conversation between two people -- not just the burden of the person living with HIV.
Marco, can you start by describing for us how you found out that you were HIV positive?
I found out that I was HIV positive because my partner at the time tested me at home. He worked at a hospital and was able to bring a test home.
And when was this?
This was July 8 of 2008. It's weird that I know the exact date.
Upon hearing that you were positive, what did you think and how did you feel?
Initially, I didn't know how to feel. And, if I could do it again, I probably would not test at home for just that reason, because I didn't know where to go, who to see, or how to link my own self into care. But immediately after, the next morning, I went out to a clinic in lower Manhattan and had them retest me three times, because I didn't believe that I was positive. So, I got to the clinic, they tested me, and they confirmed that I was HIV positive, or am HIV positive.
Did you find it odd that your boyfriend wanted to test you at home?
I did. I found it odd, not so much that it was at home, but why test me if I recently got tested prior to being in a relationship with him? And, he didn't test himself in front of me. So, I just found it a little odd. But at that time, it didn't really matter to me. What really mattered more to me was what was going on with my body, what was going on with the virus, and what did I have to do next, was what was on my mind at the time.
Prior to your diagnosis, did you think of yourself as "at risk" for HIV? Did it come into your consciousness at all?
At the time that I tested positive, it gave me a little flashback to any times that I had unprotected sex or risky behavior. But I didn't remember every single incident that I had -- you know, whether it was risky or not. But you do think about what behaviors you had before you tested positive and you think, "How could this happen to me?" I was already about 27 at that time, and I figured that I could've dealt with it easier had it happened to me when I was younger and really risky. At that time, I was already trying to protect myself more and didn't think that I was going to be infected at such an older age.
So, you know who you got HIV from, is that correct?
Were you able to talk to him about it? What was that conversation like?
In the beginning, it really didn't matter to me how I got it or from whom. It was really more about trying to get myself into care. But when I was able to do a "process of elimination," I went back and I contacted my past partners myself. I told them I contracted HIV, and I suggested that they go out and get a test done with me, just to see who it may have been. The people that I contacted were HIV negative at the time, so it wasn't them. But, when I finally caught up and did elimination, and I spoke to the person about it -- I mean, what do you expect the person to say back to you? I feel that it takes two. I should've been responsible enough to wear a condom. I can't solely blame a person who is HIV positive [for not telling] me, knowing there's a lot of stigma behind it, and it's not always easy to "come out of the closet" and tell your status. So, I take partial responsibility, too.
Besides your boyfriend who tested you at the time, who was the first person that you told about your diagnosis?
I called my mom. I called my mother the next day at 5 in the morning and I told her I was going to ruin her day. The first thing that came to her mind was that I went into jail. I told her, "No, I tested at home for HIV." She didn't believe me at first and she told me that I should go to a doctor and get it done by a physician to make sure that I tested positive. Fortunately, I have a very supportive family. By the time I got down to the clinic to test, my mother knew already that I was positive and she told me, "This doesn't change you. You're still the same person. I'm here to support you." I know a lot of people out there, they don't have the same support, whether it's from family or friends. For me, I felt very fortunate to be able to have my family that I can use as a support group at that time.
So your family members were the first people you told. How did you broach the subject with friends?
Friends were a little hard, because, just as much as I was uneducated about HIV, they were uneducated about HIV, also. The whole, "Oh, you're gonna get it from touching somebody. You're going to get it by drinking from the same glass after someone." I didn't know. As I learned more about HIV, I was able to share this knowledge with my friends. Fortunately, some of my friends were very supportive of me. Some weren't. This just goes to show who your real friends are and who aren't.
The hardest part was the medical clinic wanted me to do a partner notification with them and have them notify the partners. For me, I felt like that was chickening out. I felt that it was my responsibility to notify past partners. But I got through that with them. I went with them to get tested to show support -- that, by some chance, if I passed the virus off to them, at least I was still able to support them somewhat. And what little knowledge I had I was able to share with them at that time.
How have your relationships with family and friends changed since you came out to them as HIV positive?
Very much in the beginning. Everybody was like, "Oh, you can't do this. You can't have a dog. You shouldn't be drinking. You shouldn't smoke." Stuff like that. Everybody was on me, trying to take care of me, make sure that I take care of myself. I think that, now, with me being more open about my status -- it's not something I feel should be hidden -- but being more open with my status has made my family and friends more comfortable, I guess.
How has being HIV positive changed your personal relationships and your sex life?
When it comes to relationships, I think that HIV plays a big role in it, as far as the acceptance of someone as a partner. At first, I was reluctant to tell people my status right away -- like, "Hi. I'm Marco Benjamin. I have HIV." Because, with some people that I encountered, it was like they were closing the door on me and they didn't want to know who Marco was. The only thing they saw when I met them and I disclosed my status was HIV. Which was kind of messed up, because they weren't allowing themselves to get to know me for who I am. So, I started to find a way to tell people from the door, straight-up: "I have HIV. There's nothing I can do about it. If you want to talk to me or if you want to date me, that's fine; if not, I can still move on."
I even, sometimes, didn't tell people right away. There was a phase that I went through where I would wait six months. Like, "Why do I have to tell you my status?" But the person felt like I was lying to them; by the time I disclosed my status, they felt that everything I had said before was a lie or that I had something to hide. And I didn't want to be portrayed like that. I wanted to be very upfront with everyone. As of today, if I feel like I'm going to be in a relationship with somebody or have something better than dating, I disclose my status 100 percent.
Can you tell us a little bit about your ethnic background, how your family identifies? And, also, where you're from, the neighborhood or community you grew up in?
I was born and raised for part of my life here in New York City. I'm Puerto Rican, of Latino descent. We lived in the Upper West Side, in the projects, before we moved out to New Jersey. We moved out to New Jersey because we saw "Drug Free School Zone" signs at the time in the projects in the '80s and the early '90s. My parents wanted us to get out of that atmosphere and to New Jersey, to central Jersey. So, I spent a lot of my life in New Jersey, in New Brunswick.
Did you think it was easier or harder being HIV positive in that community? Being in a Latino family, being in New Jersey. What was it like coming out in that environment?
For me, it was a little bit easier. There's no easy way about it, but it was a little easier. New York City was 45 minutes away from my home base. So, while I came out to New York City to play and to hang out, I still went back home to my family in New Brunswick 45 minutes away. And New Brunswick, it's not as open as New York City, whether it's gays or even HIV. So, living back home was -- you were a little secluded, and you couldn't be as open as you can be here in New York.
Let's talk about your health and treatment. How has your health been since your diagnosis?
My health has been excellent. Right now, I am not on any HIV medications. I do see a physician every three months to get my viral loads. I think that I should be on some type of medication, but my T cells are about 1,300 right now, and my viral load is about 500. So, they consider me a nonprogressor. There's really no sense in me taking medications, the doctor says. That's the doctor's recommendation. I beg to differ.
So, you disagree with that?
A little bit, I disagree. There are two sides. Right now, if an accident happened and the condom broke, there's a possibility that the virus could be transmitted to somebody else, because I'm not on treatment. If I was on treatment, and an accident happened, the likelihood of transmitting the virus would be less. I had asked many doctors the first year I was diagnosed; I went through about 13 doctors, because I was determined that I had to be on medications. Every doctor told me, "No, you don't." And that wasn't good enough for me, until I saw one doctor in New Jersey who told me, "You're about 28 years old. I can put you on medications right now. But if I do, I believe that you're going to live to be 80 years old. If I put you on medications right now when you don't need them, 30 years from now when you're in your 50s, going on 60, you're going to have liver problems and heart problems and all these side effects. Do you really want to deal with that?" That kind of put it back into perspective. I don't really want to damage my body if I really don't have to.
That doctor who explained to you why he was not going to prescribe you medication, is that still your doctor?
No, not now.
What is your relationship with your current doctor?
It's great. I'm being seen by an AIDS Healthcare Foundation doctor. We are in conversation about starting me on treatment, even though I have a low viral load and a high T-cell count. I just think, why wait? It's like a car. Why wait until you hear that noise or something's wrong with it? Fix it now. That's the way I feel about my body. If I know something's wrong with me, I should be able to fix it now or take some medications to help suppress my viral load.
Do you feel any pressure to become undetectable?
No, I don't. Because if you use a condom, the chances of transmission are less. You just have to use the condom, pretty much.
I know you're excited about your work, and you're a very hard worker, so why don't you tell us about the work that you do?
When I became positive, I felt like my current job doing architecture left me with no substance. Yes, it was great to design a house for somebody to live in, but when I go knock on their door and ask them to use the bathroom that I designed, they're not going to let me in.
I worked for an architectural firm, and I saw on the Internet, on Craigslist, that they were doing an HIV protest -- against Johnson & Johnson to lower drug pricing -- in my community, in New Brunswick. I wanted to go. I really wanted to; this was my first step into doing something with HIV.
I didn't make the protest, because I was notified too late. But that evening, I went to a local bar to sing karaoke and a girl walked up to me and started talking to me. She told me that she was involved in HIV protesting. I was like, "That's so weird; someone emailed me earlier today about protesting." Long story short, it was her. So, for me, it was kind of like fate, that I met her at the same place. She's from California, I'm from New York.
From there I started doing protesting and demonstrations on drug pricing, strictly as a volunteer. Shortly after that, she offered for me to join them in Washington, D.C., to do some protesting against the FDA for approving PrEP [pre-exposure prophylaxis] for HIV prevention through Gilead, and also to start helping a demonstration against Hershey for discriminating against a 13-year-old boy who had HIV and wasn't allowed into the Milton Hershey School.
I quit my job to go to this week of demonstrations. After leaving there, I was hired as a contractor to mobilize individuals to join us for a Keep the Promise March in D.C., which would happen in July, prior to the International AIDS Conference being held in the U.S. for the first time in more than 20 years. And, since that went so great -- the mobilization efforts that I did -- I have been hired as a program manager for the Condom Nation program through the AIDS Healthcare Foundation.
Just for the sake of timeline, you were diagnosed in 2008, and then you said that you met this woman and started doing protesting. Do you know what year that was?
It was late 2008.
So, it was the same year.
And that's how you got involved in the AIDS Healthcare Foundation?
And your current title at the AIDS Healthcare Foundation is Condom Nation Program Manager?
Do you want to talk a little bit about Condom Nation and what you do in your role?
Sure. Condom Nation is a public health program. Last year, it started as a campaign. We thought it'd be great to drive around the country and give condoms away for free, especially in underserved neighborhoods. Last year, we gave away 4.5 million condoms in 25 states and visited 40 cities. We've gotten such great feedback from last year that we decided to make Condom Nation a permanent program. We realized there are a lot of agencies that cannot afford to buy condoms to give them away for free in their community to help lower the rate of HIV and STDs. Currently, we have 50,000 new infections per year in the United States.
What we decided to do, in making this a permanent program, is we upped our goal to 50 million condoms this year by way of a tour where I drive a van and an 18-wheeler truck follows me, and we visit cities and under-serviced neighborhoods to provide condom distribution for free. So, pretty much, we'll roll into a city and we'll partner with an agency that already exists that provides free testing. We allow them to test through our mobile units and we go into neighborhoods that are really under-serviced.
The feedback that we get from the community is great. One of the best days is when a mother comes with her children or young teenagers and tells them to reach into the bucket and grab condoms. The condom use talk should start from home. I also think it should start in churches. That's just my personal opinion. We all look up to the person that's standing in front of the pulpit preaching to us, but he's not preaching to us on how to protect yourself and love yourself, too.
When we do these events throughout the nation, we try to make them happy events. A lot of people have problems holding condoms, or buying condoms. When you go to the pharmacy, they're locked up. So you have to call somebody, "Can I get condoms?" "Oh, condoms in aisle 9!" So, now everybody knows I'm there buying condoms.
We feel that if we're able to bring basic prevention back into the hands of the community, it'll help people to have conversations about safe sex and protecting yourself before you have unprotected sex.
What has doing this work taught you?
Doing this work has taught me that folks like myself who are HIV positive still have a lot more work to do in educating people and letting people know what HIV really is. There are many times I go into cities or neighborhoods and there are people who think you can get HIV from just drinking out of a glass from somebody. Or just casual contact with someone. I'm not a physician or a doctor, but to be able to educate people, share something that they didn't know about HIV, it's amazing. It's awesome. I know a lot of people cannot be in the same position as I am, especially since I'm so open about my status. But, at some point, I think that that conversation needs to happen -- especially with someone who's going to be your partner, or someone you have an encounter with.
Do you ever get tired of talking about HIV or thinking about it all the time? Are there times when it really does weigh on you for a minute to talk about this virus?
Yeah, there are times when it does. I try not to live, sleep and eat HIV all the time. I still try to find some free time so I can go and hang out. In the field that I'm in, it's hard to do that. Especially with social media, and people knowing that I'm so open about my status. It doesn't fail that every now and then you get an email from somebody saying that they've just been diagnosed with HIV, and asking, "What do I do? My life is going to end. My world is over." Just being able to help them out and give them some words of wisdom and encouragement is great. So I don't mind having to spend most of my days talking about HIV.
What do you think are some of the greatest issues facing the HIV community today and what do you think can be done to change the situation?
The biggest issue is really stigma, I think. Is there a way to get rid of stigma? I don't think so. Eventually, by talking about it, yes you can decrease stigma, but there will still be stigma regardless.
For me, I was tired of dating someone or being friends with someone who now didn't want to be my friend or date me; now they wanted to tell everyone that I'm HIV positive. What I did was, I wrote on a T-shirt, "This is what HIV looks like." And I posted my picture on Facebook, because I was tired of people using my status against me to try to hurt me. It wasn't until after I did that, that I really became more comfortable with my HIV status. Because I have nothing to hide.
I don't think it's solely the HIV-positive person who has to do something. I think that, as a community, everyone needs to be a little more accepting about it. If HIV is put in our faces in a way -- I don't want to sound harsh, but if it's out there, blatantly out there, they'll see HIV as any other chronic disease, whether it's hepatitis or diabetes. And they just won't have that stigma, or be scared to interact with someone who has HIV.
Could you compare how you feel about having HIV now to your feelings when you first learned that you were HIV positive?
When I first learned that I was HIV positive, it just really hurt. Even till today, I still think about it sometimes. I don't beat myself up about it, because it's done; I can't change it. Back then, I did have my family as a support group, but what did they know about HIV? Just as much as I had shared with them.
It wasn't until I started to go to these demonstrations with AHF and surround myself with more positive HIV-positive people that my world changed and I realized that I could still be somebody, I could still be loved, and I'm still Marco at the end of the day. I just have a virus.
What advice would you give to someone who just found out they were HIV positive?
The most important advice would be to link yourself to care, by way of treatment. But the most important thing is to see a doctor and to keep going back to see a doctor, is the first piece of advice I would have.
Second, everyone says, "It's not a death sentence. It's not the end of the world." But you know what? You don't want to hear that when you are first diagnosed. For me, it worked, but it may not work for everyone. Try to find a support group, or other people who are in the same shoes as you are so you can relate a little bit and have a conversation about how to deal with your virus better.
Do you have anything you want to say? This is your time to speak to the people out there and use this as a soapbox.
The only thing that I would like to say is, that for people who are currently HIV positive and hiding their status, it is a big hurdle to jump over, but be true to yourself and be true to the next person as well. At least disclose your status or have the conversation about protecting yourself. It's not fair to put someone else in harm's way, if you would, or pass the virus on to someone else, even if you got it without knowing. It's still not right. And, to put yourself into care, that's really important. And for the folks that are not HIV positive, ensure that they should always wrap it up before they have sex with somebody.
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.