“At such a young age I was down on myself a lot and had very low self-esteem. I was dating an individual and our relationship I found became based on sex with a lot of fighting and dishonesty. I cared for this person and at times validated who I was through them. I later found out that they were positive after finding medication in their home and later going to get tested with a best friend. I always look back and wished that they were undetectable as I have always been and that I was smarter at the time and loved myself more. You live and you definitely learn.
I take a pill once a day with food. It’s a new drug called Odefsey with no side effects and easily accessible through my local pharmacy. I have remained undetectable since my diagnosis, however when I started antiretroviral therapy I was taking Epzicom and Isentress, followed by Complera and now Odefsey.
Having contracted the virus at such a young age, when one thinks they are invincible, it definitely brought me face to face with my own mortality and made me more responsible in my everyday life. I was so concerned with what people thought of me and often times did things to have people perceive this image of what they thought I should be. After my diagnosis, I kept it a secret to many, became self-aware and made a promise to stay true to who I was. Since my diagnosis my relationships with friends and family have become stronger and I’ve made it a point to keep myself surrounded by other individuals who are living happy and healthy lives along with the virus.
PrEP has definitely calmed a lot of fear of HIV in the LGBT community and has caused a lot of people to educate themselves about HIV and learn more about prevention and treatment options. More people have become comfortable with having healthy sexual relationships with folks who are HIV positive while at the same time educating others and speaking out against stigma.”
Brandon, 29, undetectable. Brooklyn, NY. Flight Attendant
Dana
“I believe I contracted HIV in 1993 from sharing a syringe with someone. There was a little bit of blood in the syringe but there was also a 1/2 bag of heroin in it and I was feeling very sick from withdrawal. The person didn't tell me they were positive nor do I even know if they knew at that time. I met them many years later at the organization I work for and they told me they were positive. During those drug-using years I was also a sex worker. That's how I supported my habit, so I had various exposures however; I still, to this day, can see that syringe with the blood in it. Back then that didn't really mean anything to me because HIV hadn't touched my world that closely yet. This is why I feel so passionate about bringing awareness before it "touches" someone’s world.
I take my medications exactly as prescribed. I have had some difficult regimens in the past and, even in the advance of new technology and once-a-day pills, some medications don't like me! I am now on Epzicom and Viramune. Feeling good!
My life has changed in so many ways. I found recovery, a purpose, love, a career doing something I love! But the main thing that HIV has changed is that I found out that I am a tough cookie! I'm strong, I'm powerful and I have a voice. That's how HIV has changed my life for the better.
Just normalizing this condition makes a huge difference. If we don't end the stigma, we can't end this epidemic. Knowing that we, HIV+ and HIV-individuals, can take responsibility is huge. Campaigns such as U=U help those of us with HIV not feel so infectious. PrEP certainly has the ability to change someone's relationship with their sexuality and feel more comfortable. I have had a partner (not HIV+, but passed away 5 years ago) who helped me feel comfortable with my sexuality. PrEP can help people do the same.”
Dana, 57, undetectable. Queens, NY. Director of Health Services at a CBO, Exponents.
Kam
“Not sure how I was infected. I was sexually active, but also worked for years as a paramedic around blood, etc. In 2007 I had been in hospital after having a second bout of shingles and then bilateral Bells Palsy. Doctors knew I was gay and worked as a paramedic. I consented to be tested for HIV and they ran a multitude of tests. After 3 days I was discharged and told all blood work was normal, but they never did the HIV test, unbeknownst to me. I went back to work, finished law school thinking I had dodged a bullet. Fast forward to late 2009 & early 2010 when I got my law license and was working as a law clerk writing judicial opinions and I started having severe memory problems, and having difficulty walking. I was back and forth to hospital and they were mistakenly diagnosing me with Multiple Sclerosis among other things. I had some lab values way off and FINALLY was sent to a hematologist and he said it looked like I had advanced HIV. He ordered the test and it came back positive with a CD4 of just 9 in late January.
I have been taking Atripla once a day since I was diagnosed. Undetectable since 2011 with CD4 in 400s.
Sadly, due to my condition, I have been estranged from my family. I was erratic because HIV attacked my brain. So that has been the biggest change. I think my family could not deal with how it affected me when I got really sick.
I think PrEP gives me more comfort knowing that combined with me being undetectable, it is virtually impossible that I infect anyone. I am out to all partners about my status, but I prefer fellow undetectable men or guys on PrEP taking care of themselves.”
Kam, undetectable, New York City. Actor, former paramedic and law clerk.
David
“I tested negative for about 3 months after becoming infected. I was very sick for most of the summer. I even went to the emergency room with a high fever, but I still tested negative. It wasn’t until august that it was finally revealed that I had been infected. In a way I wasn’t that surprised, given how sick I had been all summer. But it was still very upsetting. It definitely changed my life.
Today, I have a much greater appreciation for my health. My experience with the infection has shown me how strong, yet fragile the human body can be. I take Triumeq once a day.
I think the introduction of PrEP has strongly affected my life. It has made having HIV less stigmatized and feared by potential lovers. I welcome the sense of sexual freedom it brings. Though, I do worry that it may lead to an increase in other STIs. But, for the most part, it has brought a sense of security.”
David, 32, undetectable. Harlem, NYC. Personal Trainer
Tyler
“I was in Boston when I got the phone call that began the spiral. Back then sex, crystal meth, and G-d were the only things that got me through the day. I knew what I was doing and I knew the risk; it wasn’t that I didn’t care but at the time it just seemed to be the least of my problems.
In addition to living with HIV, I’ve lived with needle phobia all my life. By the time I had seroconverted, my mental illness had reached a level of severity that was preventing me from seeking any medical care, let alone monitoring or treating my HIV infection. This went on for years until I got sick. My CD4 count was 219. I realized that if I didn’t seek treatment for my mental illness, I was going to die and I didn’t want to. So, I got treatment. With medication and therapy, I learned to deal with my phobia in a way that allowed me to begin HIV treatment.
After failing off 2 ART combinations, I started on Tivicay and Truvada although I've recently switched from Truvada to Descovy. Within 6 months I was undetectable and a year later my CD4 counts had more than tripled. Now, almost 4 years later, I'm still undetectable and my numbers remain in the 800s.
It took getting HIV and almost dying to find happiness and a purpose in my life. I was writing a response to something ignorant on FB regarding HIV and I realized that I had knowledge and skills that could make a difference in the lives of people living with HIV. I wanted to give something back so that others lives might be a bit easier than mine had been. In that moment I realized I wanted to devote my life to HIV activism. It inspired me to take up cycling so I could fund raise and complete my first AIDS/LifeCycle. It brought me to NYC to begin a career in HIV social work. It’s given me an appreciation for life that I don’t think I could have ever felt had I not contracted HIV. So, to quote Edith Piaf “Non, je ne regrette rien.”
My love affair with sex is as a torrid as it ever was albeit in a much healthier way now. I am grateful that because of PrEP others can now share my love for sex more safely and without fear.”
Tyler, 30, undetectable. Brooklyn, NY. HIV Social Worker
Daniel
“A guy one night informed me he was undetectable before we had sex here in NYC back in the summer of 2013 when I was 20 years old. We fucked without a condom throughout the night because I knew that being undetectable meant that contracting HIV wasn't possible. I started to get sick about two weeks afterwards and it turned out to be my seroconversion. I later learned from other guys who knew this individual that he lies about being undetectable to others before fucking. Unsure if it's just to fuck or if he purposefully targets people cause I've heard that this has happened to others, but that's how it happened.
I've been on ART as soon as I seroconverted back in 2013. I've been on 5 regimens, but the two I'm on now are Tivicay and Descovy.
I'm much more aware of my physical and mental health now. I have to be on point on those aspects of my life, and I honestly am in the best shape I've ever been in my life, both physically and mentally. I currently work with HIV organizations because of my background in nonprofit management and my passion within current HIV-related issues.
PrEP has 100% changed my sexuality. All of my sexual partners who are on PrEP are able to be more comfortable and 100% themselves with me because of that added layer of prevention they act on.”
Daniel, 25, undetectable. Brooklyn, NY. Working in HIV-related environments, including The HIV League.
Jeffrey
“I was 20 when I contracted the virus. I was in a relationship with this dude for a year and a half and I didn't know he was positive. We did our thing and still he didn't tell me that he was positive. When I found out I didn't know what to do. I didn't know if I wanted to kill myself or kill him.
I am now undetectable and the mix of meds that I take consists of Tivicay and Descovy.
My life hasn't really changed much. Even though I have to take pills on a daily basis, life is still going on beautifully.
I love the fact that people today can protect themselves from the virus that I carry thanks to things like PrEP and PEP, but I also wish that PrEP was around before I contracted the virus.”
Jeffrey, 24, undetectable. Bronx, NY. Student
Jose
“I don’t think it is important anymore how HIV came into my life. It is unfair to blame anyone because I have not been a saint. I faced the situation and I carried it like any other disease, not allowing it to affect my life in any way by following my treatment and living as healthy as possible.
My vision of life has changed drastically. I think that HIV is not really threatening to my physical health as it is to my mental health. But, when you come to accept it and realize that you can live a normal and full life thanks to the meds, fear and stigma just blur away.
I take Truvada and Tivicay once a day everyday.
The fact that now HIV- people have access to PrEP hasn’t changed my relationship with sexuality. I’ve always felt fully empowered to enjoy my sexuality freely. But I do feel that PrEP has changed the general attitude. Now most guys who are on PrEP want to have bareback sex and that is a problem. PrEP is good for HIV- people to stay that way, but doesn't make you immune to other STIs.
My name is Jose I'm a 38yo Hispanic male. I have been living with HIV since 2009 and I am now undetectable. I currently live in NYC and work as a bartender/server.”
Linus
“To be honest, how I contracted the virus is a bit of a mystery. I was always rigorous about condom usage during penetrative sex. I know the 2-month window in which I was infected so here are two possibilities:
1. A man who I gave oral sex to had a scab on his penis. I had brushed my teeth recently. Highly unlikely, but still a possibility.
2. A man I had sex with in Berlin was teasing my anus with his penis. I began to bleed from my sphincter (though I'm not sure why). I bled on his couch. It's possible that there was an exchange between precum and my bloodstream. Someone also may have removed a condom somewhere along the way without telling me.
I take Truvada and Tivicay. I am healthier than ever. I have been undetectable for 2 years now. I get blood work done every 6 months and my results always reflect that I have a very strong, healthy body.
After seroconverting I fell into a spiral. I was living in Berlin at the time, and I began taking lots of drugs and partying for days straight. I also started documenting my life with a Camcorder, and made my first documentary film, POSITIVE, which premiered in New York last year and will be available online next month. In the time since then, I've gained 50 pounds of muscle, have gotten completely sober, and have moved back to New York City to be an actor and a filmmaker full-time.
PrEP has allowed for a new wave of education around HIV. Rather than approaching me as an infected or diseased untouchable, my partners that have been on PrEP have been more confident that they are taking the appropriate steps to protect themselves - and so they treat me as an individual instead. This is a beautiful shift.”
Linus, 25, undetectable. Brooklyn, NY. Actor and filmmaker running a small production company.
Bryan
“I was infected when I got a needle stick from a dying AIDS patient in 1991. I was drawing blood and he had a severe hallucination of large pink spiders crawling all over him, which caused him to jump violently. As a visiting Nurse I pursued workers’ compensation and after a 10 year legal battle I stopped fighting. The stress was not worth any amount of money.
I take care of myself by eating a well balanced diet and taking Descovy with Tivicay. I also walk often.
Being HIV positive has been an amazing blessing in many ways. I traveled the world to find an alternative treatment. Learned about ozone therapy that limits viral replication and can keep you healthy. I helped children recover from Autism living in Mexico for 3 years. Unfortunately, I contracted a parasite in Mexico that required me to get treatment here in the US and start the traditional AIDS cocktail. As a long-term survivor, HIV has caused memory issues, migraine headaches, heart disease, and a list of other issues that prevents me from working. Being positive feels like a mixed curse sometimes, because it interferes with dating. I hope to find true love one day.
Socially I still find that people are resistant to date me even though I'm undetectable and not contagious. Sometimes even when they are on PrEP. I volunteered for this project to help educate people to no longer be afraid of those who are medically compliant and undetectable.”
Bryan, 53, Undetectable. Queens, NY. Former Registered Nurse
Richard
"One night I went over to a guy's house to have sex. He had a friend over and we all were fucking but I believe his friend didn’t know he had just contracted it. So he passed it along to me. A few months later the guy and I reconnected and we both found out we were newly diagnosed. I never told the guy I think he gave it to me.
I have Medicaid through the State of NY and take Genvoya.
Because of HIV I'm more confident. It made me grow up fast. I had to learn who I was and what I wanted to be so much faster and now I feel I have a very distinct voice. I know what I have to say and I know who I am when I say it.
I don’t think PrEP has changed how I feel sexually. But I do feel it has changed how people are sexual with me. Everyone seems to be a little more open to fucking bare now that there is PrEP than before. And they think less of me as someone with this so-called deadly virus. People are definitely more open to sex with me than before."
Richard, 23, undetectable. Brooklyn, NY. Theater Artist.
What does undetectable mean?
It means that the traces of the virus are so low that modern medical tests can not “find” HIV. It does not mean cured. It means not detectable.
A viral load test is a lab test that measures the number of HIV virus particles in a milliliter of your blood.
So, when someone says that they are undetectable, it literally means that they have reached a point at which their virus is not detectable by modern lab tests and they are not going to transmit HIV to sexual partners.
There is now evidence-based confirmation that the risk of HIV transmission from a person living with HIV, who is on Antiretroviral Therapy (ART) and has achieved an undetectable viral load in their blood for at least 6 months, is negligible to non-existent. (Negligible is defined as: so small or unimportant as to be not worth considering; insignificant.) While HIV is not always transmitted even with a detectable viral load, when the partner with HIV has an undetectable viral load this both protects their own health and prevents new HIV infections.
(from preventionaccess.org, and imstilljosh.com)
Constantine
"It was the beginning of the semester, the weather turning. I figured it was just another sinus infection but when I went to the doctor nobody could figure it out. You're just sick, they said, sleep it off. I'd recently moved from Tennessee to Brooklyn, and it was about to be my second year teaching Creative Writing at a college in the city. I was interested in getting on PrEP and now seemed like as good a time as any. They have to screen you first, to be sure of your status. I let them take my blood, all routine. They told me very simply that same day that I was positive and did I know and I said I didn't. The counselor they connected me with said probably you picked it up a while ago and that time you got sick was your body's first immune system shock. Have you had many partners in the past six months they asked and I said yes. Do you know about how many and I said no. I was never any more or less careful than I thought any of my partners were. I guess I took most of them at their word, and they did the same for me. If I try to trace it back, not for want of anyone to blame, but just to guess at the timeframe, I honestly couldn't say for sure was it this weekend or that. One day it just found me.
I'm on a once-daily two-pill combination of Tivicay and Descovy. I managed to get set up with ADAP, which has made that medication available to me at no cost, which is maybe the most reassuring part of the whole thing so far.
I'm kicking the smoking thing. That one's been a long time coming. Also going to therapy for the first time in my life. I'm a product of the conservative Christian South, and growing up a queer "creative type" I was constantly reminded that emotional/mental problems weren't real problems. You got a roof over your head, dontcha? You got food to eat? God will provide the rest. Toughen up. Just deal with it. That kind of thing. In a way, this status change has opened a door into a whole house of self-care that I never allowed myself access to. In a way, for that anyway, I'm grateful.
I think PrEP is really wonderful, and genuinely allows folks to be much more in command of their sexuality. That said, it's still tricky. There still has to be a conversation every time, every encounter. And for whatever reason (which was certainly true for me for a while) people aren't always comfortable being honest about their own self-care. I think a lot of that has to do with the inherent stigma left over from outdated terminology like "clean" or "disease free." You just have to hope that if we change the language we use we can also change our relationship to this component of our sexuality."
Constantine, 25, undetectable. Brooklyn, NY. Teaching English and Creative Writing at college level.
Ed
“In my twenties, I moved to New York from San Francisco: I had gotten entrance to an Executive Training program at a high-end department store. I was so excited to begin my career as a buyer in a major company. My excitement and anxiety about the city soon led me to a life of going to bars and clubs and having one night stands. It was on one of these occasions that I believe I contracted HIV. I found out I was positive in Dec 1999. In that moment, I thought my life was over.
I have been on different cocktails since 1999: first it was Sustiva, then Complera for many years, and most recently Odefsey. One pill a day.
During the past 18 years since I found out I was positive, I went down the trail of drugs and alcohol in a big way. It was a slow thing that I thought I was managing for a while until as with most, I wasn't. I eventually found recovery and a new perspective and for the past seven years: I have been able to accept myself for who I am, the good and the bad. HIV is just a small piece of me that I've learned to manage appropriately.
I am very happy that Truvada is now available. It's part of the cocktail I take every day. I believe in some small way it has lessened the stigma of being HIV+. If someone has HIV and is undetectable, you can't transmit the virus. I think this is the most important message that we need to get out there.”
Ed, 47, Undetectable. Chelsea, NY. Working in wholesale planning
Rajan
"I was born in India, but I grew up in New York. I’ve gone back and forth between these two worlds typically described in binary terms as East and West. I find this way of thinking very anxiety provoking. My parents, being Indian immigrants, expected me to be successful in America while keeping some Indian culture intact. This conflict was complicated and I was aware of it at a young age. To understand both these worlds, I have always confided in science and in what the power of scientific knowledge can do for societies with deep-rooted beliefs systems. And so PrEP made perfect sense to me because there was enough scientific data to prove that it was a way to end this epidemic. I wanted to be part of that and at first it felt risky, but the more I thought about it, the more convinced I was that I was reducing my risks and was being more conscious of my overall health.
I get PrEP from Callen-Lorde, an LGBTQ health clinic. My health insurance pays for this medication. I am aware of the health care debate that has been going on in this Country for the past 3 decades. For me, the health care debate is valid concerning who is paying for this expensive medication versus who is benefiting from this drug. These issues go back to the notion of public good in a society and who pays for it. This blue pill does raise many important questions about the nature of our society as a whole, but, ultimately, I believe the collective "we" should choose progress over stagnation, just as we did when we chose cars over horses and carriages, and now driverless vehicles.
I think it is common to associate Truvada with the way people have changed their sexual behavior, however, I think that is misleading. I believe that a pill cannot make people do anything more or less, just like Coca-Cola doesn't make one happier as portrayed in their commercials. I do feel much safer in having sex because of the scientific evidence this pill has propagated."
Rajan, 32, on PrEP. Brooklyn, NY. Working in Tech
Nicholas
“I met a guy who was on vacation in NYC at the beginning of his trip. He was beautiful, seductive and convincing. He told me he was from TX and that he was returning home in a few days. I was 16 at the time and my lust for him came on quickly and intense,as does most teenage affairs. On the last night of his trip he asked me to return to TX with him. I threw everything up in the air and said yes. As soon as we deplaned and arrived at his home, I experienced the most terrible shift of my life, the rudest awakening ever. I walk into this cruddy crack den he calls a home and find two small beautiful children, ages 2 and 5, and he introduces them to me right away; ‘these are my babies’. I had no idea he had children. Where’s mommy? In prison. The money he was blowing on our extravagant New York adventures was an overdue child support fund that a judge declared the mother pay him. He dropped his bags, went straight into his room and started smoking crystal meth, right in front of his kids. I was in total shock, numb, sensationally surreal. After I learned about my diagnosis and posted about it on Facebook he called me immediately, crying ‘I am sorry I never told you I was positive, I was afraid you wouldn’t like me anymore’. My response: ‘Are you f*cking stupid? Now I REALLY don’t like you’.
When I first found out I was positive I immediately thought that my love life would be over. I was so wrong. The men that I have been meeting now are far more intelligent, open-minded, considerate. I would never want to date someone who is uncomfortable being with someone positive, because that just blatantly shows a serious lack of education, intelligence, adaptability and ignorance.
I suppose that people having access to Truvada helps me in the sense that many who would have never considered being with someone who is positive, now consider it thanks to things like PrEP and PEP. My ex-boyfriend was and still is negative. We had unprotected sex for the length of our relationship and he only got on PrEP a few months into us dating. If you are sexually active, get on PrEP! I wish it existed back then.”
Nicholas, 22, undetectable. Chelsea, NYC. Freshman at the Fashion Institute of Technology