True Tales of Sex, Love, and Peace of Mind

PrEP can be a serious commitment and there may be hurdles along the way. Solid information is key, especially when it’s written in language that is friendly to you and your provider. Some people also derive a lot of benefit from hearing the experiences of others. Here are five brave souls who are proud of their decision to start PrEP, and not afraid to explain why.

What made you think to start PrEP?

I first heard about PrEP in 2012 while working at Apicha Community Health Center, which does HIV prevention and treatment for LGBT and people of color in New York City.

I didn’t think about it for myself, though, until the tail end of 2013, when I started a non-monogamous relationship with a man who didn’t always use condoms, and we were having sex without condoms.

Also, I have trouble negotiating condom use when I drink. Drinking is a big trigger for me. I don’t always want to use a condom when I drink.

How did you go about getting a prescription?

I’ve been super fortunate to have a pro-PrEP doctor who is also my health cheerleader. I didn’t need to convince him.

We had two or three conversations about it. He asked me questions about my sex life. I’m living with diabetes, so we talked about that, too. Because I already take daily meds for that, he knew I could adhere to PrEP.

But I’m an atypical case. Accessing PrEP can be much harder for some people than it was for me. Some people have jobs where they can’t take a break to call their doctor. And you have to learn the language of the insurance and medical industry—a whole new jargon.  Access should be a priority issue.

What about paying for it?

The first pharmacy I went to told me it was $1,295 per month. I went to a second pharmacy, and they told me to go through a mail order pharmacy. Then my provider had to fax information over to them. There were a lot of phone calls to my insurance company.

It took a long time. It took a lot of patience on my part and my doctor’s part. It wasn’t the hardest thing in the world, but it was a lot of running around.

Now that you’re taking PrEP, what do you think?

PrEP is pretty great for me. It’s allowed me to have a better sex life. Most gay men spend their time wondering what are the chances that semen permeated the condom, or how many days until they can get tested again.

I’m stressed out by nature, so PrEP has helped me with my mental health. It allows me to have better sex because my head is more in the game.

Is your experience different from what you had expected?

It’s what I expected. It has given me peace of mind. 

PrEP has put me in touch with my own body, and because fear has been taken out of the equation of sex, I have room to do things I may not have done before. I’m more excited about sex, and more sexual.

Do you ever use condoms even though you’re taking PrEP?

I still use condoms when my partner requests it, or if I don’t know my partner that well. PrEP is like putting a security system on your house: you still don’t leave your door open for everyone.

Do you have any advice for people who are thinking about starting PrEP themselves?

When it comes to PrEP you are going to be your own best advocate. You need to be vocal with your care provider. Some doctor’s offices are frustrating, but they can be advocates for you if you advocate for yourself.

You have options. 

When and how did you hear about PrEP?

It was January 2014, and I was stressing a lot about what it means to be gay, and suddenly starting to have sex with gay men. A friend, who was in a [mixed HIV status] relationship, told me there’s a pill now that makes it all kind of irrelevant.

How has it been as a trans person to think about PrEP in the absence of good data?

It’s certainly unsettling. But I recognize that PrEP is the best option we’ve got, even in the absence of confirmed data about how it works in our bodies. Most of us—some studies put the number around 81%—don’t use condoms in sexual encounters. There are a number of reasons for this, not the least of which is how hormones affect our vaginal tissue. So for those of us who engage in receptive vaginal sex, condoms are incredibly uncomfortable and arguably more dangerous to use than barebacking.

PrEP is the best option there is, for now, to protect myself against HIV.

Has your experience with PrEP been different from what you expected?

Definitely! It’s been interesting to me to see how casually a lot of guys approach sex without giving it much thought. I think maybe some of that comes from [me] being socialized as female for 25 years. The burden of birth control, and for making my partners wear condoms, and for getting tested for STIs, was all my responsibility.

That’s just a completely different mindset from what cisgender gay men [those assigned male sex at birth] have about STIs and HIV testing. So my experience on PrEP has coincided with my transition into what I call “Fag Space,” where visits to bathhouses or sex parties are a pretty normal part of my culture now.

Did you have any difficulty accessing PrEP?

Only a little at first. I went to my primary doctor and asked for it. He said he couldn’t prescribe it, but that there was a study going on through Gay City [LGBTQ wellness center offering arts, health, and community-building services] where I could get it, and that when the study was over he’d be able to continue prescribing it.

The researchers make sure the providers get PrEP training in the process so that hopefully in the future they’ll feel more comfortable doing it all on their own. Finding competent doctors as a trans person is hard. I ended up leaving that aforementioned primary care doctor because his nursing staff kept emasculating and disrespecting me —and this was at an LGBT clinic. But I’m fortunate to have found a doctor just recently who seems trans-competent, and who is also an HIV specialist.

What advice would you give to others who are thinking about PrEP?

Probably above all else, I would recommend joining the [PrEP Facts] Facebook group, and connecting with people there who know the system and the hurdles that come with being on PrEP. I wish I’d been aware up front that there would be some backlash from guys who think less of people on PrEP. But having the PrEP Facts group gave me a place to find support and camaraderie when those moments happened, and it was great not to feel alone in this journey.

Whatever your method of finding support, I think that’s a really important thing to do.

Fear no more

Julie Lynn (a pseudonym, as she wishes to remain anonymous), 49, lives in Connecticut. The epidemic hit when she was a teen, but since starting PrEP in September 2014 she’s been celebrating her sexuality like she hasn’t in years.

When and how did you first hear about PrEP?

I remember exactly. It was last summer in New York magazine. They had a wonderful article about PrEP, and how controversial it was, and it was filled with lots of beautiful photos of gay men. A friend of mine posted it on Facebook. I’d never heard about it and it was really eye opening.

The thing, too—I know it had to be a Tuesday or a Wednesday, because I was in my knitting group—I asked all the women that I knew, “Did you know there’s a drug you can take to prevent HIV, and it was approved by FDA two freaking years ago?”

No one believed me.

How did you decide that PrEP was right for you?

That took a little bit. The morning after I saw the article I talked to one of my lovers, who’s a physician. I wanted to know everything he knew about Truvada for PrEP. He said it just never occurred to him to tell me about it.

In a lot of ways I was initially suspicious that PrEP was too good to be true. I did a lot of research. I just couldn’t find a reason not to [take it].

I was a college freshman in 1984 when AIDS really broke into the news. It had this really chilling effect on me. Before then I was an adventurous girl, and then that all came to a stop. I decided not to have sex again, because no one died of not having it. I kept that up for more than a year, and then science caught up with my fears.

I didn’t realize how much fear I still had until I started taking Truvada. I actually started crying. I don’t have to be afraid of sex. It was a profound moment for me.

Has your experience taking PrEP been different than you initially expected?

Some people complain about side effects, but I haven’t had them. Of course, you have to go back regularly for tests, but so far there’s nothing wrong under the hood so to speak.

Do you talk to people about being on PrEP?

I originally planned on not mentioning it with new or casual partners—I didn’t want to risk a contest of wills over condom use if new folks knew that I couldn’t get HIV. I kind of ended up going the other way though.

I do public speaking, and I often share the stage with folks who talk about such serious subjects: HIV in prison populations or HIV and homelessness. My talk amounts to, “Sex is fun, let’s have some more of it.”

I met a new guy who also does public speaking. Part of how we bonded was talking about our common experiences as speakers, so it was natural to tell him that I’m on PrEP. 

When we finally had a conversation about condoms, he asked if we could skip them because I’m on PrEP. Given that he already knows that I speak about sexual health, it was actually easier to explain why we couldn’t skip the condom.

Anything you’d add based on your experience taking PrEP?

Before PrEP there were things I hadn’t felt free to do for many years. After PrEP I could have sex with someone without having to know every teeny tiny detail about their sexual health. I was like a kid in a candy store, and I had a lot of adventures.

Now that I’ve had those adventures, it turns out such casual encounters are less interesting in fact than in fantasy. My behavior may go back to what it’s been for several decades, but at this point, if it does, it will be an informed choice rather than an absence of choice.

What made you think to start PrEP?

I read an article about this pill that could prevent HIV a few years ago. I didn’t know much about it, though, until I took a quiz, “Is PrEP Right for Me?” on the Stigma Project’s website. It suggested that I talk to a provider.

What did you do next?

I went to my regular healthcare provider. He was very knowledgeable about PrEP, very thorough, and very thoughtful.

He asked me about my sexual habits and history, and about my perceived level of risk. Had I ever taken a daily pill before? He was trying to determine my likelihood of success. We agreed it was the right option for me.

I’m lucky. He didn’t judge me. Many LGBT people fail to disclose their sexual identity or sexual activity to their healthcare provider because of real stigma.

How did you assess your own risk?

It took a really honest conversation with myself. I’m a young gay black man living in Washington, D.C., a city with high rates of HIV, and there are many other young gay black men with whom I’m having sex with, who may or may not have HIV.

There’s an old trick in public health. If you ask people, “Do you use condoms?” they’ll likely say yes. But if you ask, “Did you use condoms the last three times you had sex?” they might say no. The point is, people often tell healthcare providers and health researchers what they want to hear because of real or perceived stigma.

I accepted that I sometimes engage in so-called high-risk activities, and that there is nothing wrong with me seeking out tools like PrEP to stay healthy in light of that.

Now that you’re taking PrEP, what do you think?

I feel empowered. I feel less stress now than I did before. I used to constantly worry about whether I was doing enough to protect myself. That’s gone by the wayside.

I don’t think people talk enough about the mental health benefits of PrEP. I can’t emphasize that enough. The number one reason people don’t get tested for HIV is that they underestimate their risk. The second most common reason people don’t get tested is that they don’t want to know the answer.

Are you open about taking PrEP?

It’s one of the first things I tell someone. My mother told me when I came out that she didn’t want me to get AIDS and die. I’ve told her about PrEP and that I will likely not get AIDS and die, and she thinks that’s amazing.

And it’s something I talk about with sexual partners. Usually I’ll ask someone, “When’s the last time you were tested for HIV?” And then we talk about PrEP.

A small, but vocal group of skeptics think PrEP is a bad idea—that it can lead to riskier behavior. What do you say to them?

PrEP has opened up a world of possibilities to dating and love. I would think this is what Larry Kramer [the founder of ACT UP, and PrEP critic] and other advocates are working toward: a world where HIV doesn’t have to be stigmatized.

This is the manifestation of the advocacy they’re doing. People with HIV don’t have to be pariahs, but can be more accepted by their husbands, their wives, their families.

[Someone] has called PrEP a party drug. It is, but not in the way that person means. PrEP is something we should celebrate.

Do you have any advice for people who are thinking about starting PrEP themselves?

It’s okay to feel many things about PrEP. It’s okay to feel apprehensive, excited, or [have] conflicting emotions. It’s a fraught issue. But I would hope after talking to a knowledgeable, compassionate provider, that no matter what society thinks, or your provider, that you would feel empowered to take PrEP, if it’s right for you.

Sex is something we should all be able to enjoy, and PrEP is something that can help us do that.

When and how did you decide to start PrEP?

It started out as a bit of a joke early last year when we were planning a PEP and PrEP community forum for the transgender community. We were having trouble tracking down a transgender person taking either, so to help out I said, “Well hey, maybe I should start taking PrEP.”

I was married, then, and in a strictly monogamous relationship. I didn’t consider myself high risk. But this got me thinking about PrEP and I realized, even if you think you’re in a monogamous relationship, there’s always a risk.

Since then I’ve divorced and started dating again. Even with the best intentions sometimes it’s hard to plan when and how I’m going to have sex. Sometimes things just happen.

Did you have any problems getting a PrEP prescription, or paying for it? 

PrEP can be difficult to get, but I have the best doctor in the world—Dr. April Soto—who works for Kaiser in Pasadena, California. She’s a great transgender advocate.

I shot her an e-mail, I told her I was thinking of going on PrEP, she called me, we talked about it, I went in, I took some tests to make sure I was negative and didn’t have any STDs, and got a prescription.

The only problem I encountered was with the pharmacy. I get help with my co-pays. Usually my prescriptions at Kaiser [Permanente] are $15, but this was $50, and when you work for a nonprofit that can be a lot. But I was able to work that out.

Is taking PrEP different from what you thought it would be?

I was concerned about side effects, and hormone interactions, too. But Truvada is a very mild drug [for most]. Sometimes, rarely, people get side effects, but I’ve had absolutely none.

It’s important to take it every day, but for me it’s now a habit. It’s been like taking a vitamin.
I have my little pillbox, so I can see each day that I’ve taken it. It’s not even a thought, now; it’s just part of my daily routine.

Has it changed the way you feel about sex?

I feel empowered. I feel inspired to tell people about PrEP. Not just people in my community, but everyone, no matter their risk or sexual orientation. Why not use something that can protect you?

PrEP has given me sexual freedom and a chance to just breathe. I’ve heard other people say the same thing.

Do you still use condoms?

It depends on who I’m with, or if I’m dating someone seriously. PrEP is a tool, but you can still get other things. Some people carry around gonorrhea or syphilis asymptomatically.

Now I think about prevention on a daily basis. With PrEP you get tested every three months. If anything, taking Truvada makes me more cautious.

What do you say to people who criticize PrEP, or who say it’ll lead to riskier behavior?

Sex is stigmatized, and stigma is one of the biggest issues we face with PrEP, HIV prevention, and sexual health in general.

There is nothing wrong with wanting to have sex. And there’s nothing wrong with wanting to take charge of your own sexual health, no matter what other people say.

PrEP is a big deal, especially for young people. We’re looking at a whole new generation who could have a lower rate of HIV.

Do you have any advice for people who are thinking about starting PrEP themselves?

Your sex life is your own. Sex is very personal.

If you’re thinking about PrEP, know that it’s a terrific option. Talk to your provider. Take charge of your sexual health. You’re empowering yourself.