When Condoms Aren't Enough

On Monday, August 3, I tested positive for HIV.

That night, I sat on the sofa in my friend’s high-rise apartment in downtown Miami, peering down at the grainy, sodium-vapor-lit sprawl. I related the story of an older friend who’d tried to console me by saying HIV-positive people stay healthy. His words, while well-intentioned, only served to amplify the generational difference between us: Gay Millennials, when they think of HIV, think more about dating than about death. On my way over, I’d seen couples walking together and thought about how I’d likely never have that—so many people I might have coupled with, all lost opportunities now.

For men in America with access to health care, HIV isn’t usually fatal. But it’s stigmatizing, expensive, and permanent.

I didn’t cry. I was more than hurt; I was shocked, and indignant. I’d been taking Truvada, also known as PrEP—short for Pre-Exposure Prophylaxis—a daily, two-drug regimen that prevents the transmission of HIV. How did I get HIV while taking Truvada? I wondered. Was it the guy I had sex with in the first few days, when the drug might not have reached optimal potency in my blood? Was I exceptional? Was PrEP not as effective as it had been billed?

When I’d gone to the AIDS Healthcare Foundation clinic near my home in South Beach, I wasn’t intending to take an HIV test—I’d been taking PrEP for months, but knew I was still at risk for other sexually transmitted infections. When I arrived, the woman at the desk in the empty waiting room informed me they didn’t do the full spectrum of STI tests until later that day, but she offered to do a rapid HIV test in the meantime. I agreed. She took my name, my address, my sexual history, and then pricked my finger. We waited a moment in the silent room for the results.

You tested positive, she said.

Then she kicked into gear. Do you have people you can talk to? she asked. Yes, I said. A support network? Yes, I said. After arranging a lunch date the following day with one of their counselors, I exited the clinic into the street.

Miami is very sunny in August. It’s not a forgiving place to be sad.

Truvada, made by the pharmaceutical company Gilead Sciences, was approved by the Food and Drug Administration in 2012 to prevent HIV in those at high risk for infection. Early studies found it to be somewhere between 92 and 99 percent effective. In a study earlier this year of 657 men in San Francisco who took PrEP for two and a half years, it was 100 percent effective; none of them acquired HIV.

The drug is the combination of two chemicals: tenofovir, discovered by Czech and Belgian chemists in in 1984, and emtricitabine, formulated by three Emory University scientists after they attended an international AIDS conference in 1989. Gilead developed an oral form of tenofovir in the late 1990s, and co-bought the rights to emtricitibine from Emory for more than half a billion dollars in 2005. Tenofovir is the bedrock molecule in the company’s four HIV medicines—Truvada, Atripla, Complera, and Stribild—which together comprise a $10-billion HIV franchise.

These medicines aren’t cheap. Truvada can cost as much as $1,500 per month. But even with this profit potential, Gilead has said that it “does not view PrEP as a commercial opportunity,” and only began promoting Truvada as PrEP earlier this year.

And while PrEP is championed by public-health organizations like the Centers for Disease Control and Prevention and the World Health Organization, others in the field approach PrEP with trepidation, concerned it might spur a decline in condom use and fuel an increase in other STIs.

Chief among these is Michael Weinstein, the CEO of the AIDS Healthcare Foundation, who maintains that many gay men won’t take PrEP consistently and that broad use of the drug could spark drug resistance in HIV-positive patients. Last year, Weinstein called PrEP a “party drug” that was a “public-health disaster in the making.”

“If something comes along that’s better than condoms, I’m all for it, but Truvada is not that,” Weinstein told the Associated Press in a 2014 interview.

Actually, he’s wrong. It is.

I began to think about Truvada last fall, when a friend of mine mentioned that it was gaining currency as an HIV-prevention drug. This friend knew that I generally only had condomless sex—and that as a result, I rarely had sex at all. As a gay man who has receptive sex—and who lives in Miami and Washington, D.C., the cities with the first- and fifth-highest HIV rates in the U.S.—I knew how high my risk was, and for the most part, I wasn’t willing to chance it.

I already had eluded HIV once before. In 2013, during a vacation in Chile, I’d hooked up with a guy I met at a club. We maintained a long-distance relationship, and when I went to visit him in 2014, I came with two over-the-counter HIV tests. He tested positive. At a seaside resort where we traveled to soften the blow, he developed a crippling fever, and we were forced to seek help from an urgent-care clinic. Tengo SIDA, he told the nurse. I have AIDS. What I remember most was the taxi ride from our hotel to the clinic where he clung to me, bawling, as he repeated that he didn’t want to die. To him, AIDS was a death sentence. Everyone he’d known with HIV had died.

Usually, when I mention this, I omit that I didn’t actually buy the tests. In fact, this same friend of mine, the one who would later tell me about Truvada, handed them to me to tuck into my suitcase before I left. The takeaway: I dodged infection because someone who loved me knew that encouraging me to use condoms would fail.

So when another Miami friend of mine mentioned he was taking PrEP, I began to consider it. I made an appointment at my doctor’s office. The physician’s assistant listened attentively as I explained my situation: gay man, age 33, inconsistent condom use, high-risk behavior. I said: I’m interested in starting PrEP.

He told me he wouldn’t write me a prescription. It’s for couples where one partner is HIV-positive and the other negative, he said.

He suggested I use condoms, adding that straight men manage, and they have to worry about pregnancy, too.

Tape a condom to your leg, he told me.

Flabbergasted, I made an appointment to see another doctor, one whose name I’d gotten from a friend already on PrEP.

How often do you have sex without a condom? this new doctor asked.

I explained my situation: I was there because I don’t like sex with condoms. I knew it put me at risk, so I rarely had sex. I knew it wasn’t the right reason to ask for PrEP, and I knew it wasn’t 100-percent effective, but I knew asking for it was the right thing to do.

Hmm, he murmured. If he had an emotional reaction, it didn’t show.

Then he said what every gay man seeking PrEP should be told: Well, it’s great that you’re trying to protect yourself. You’re doing the right thing.

He ordered the necessary blood work and told me to come back in a week.

When my test returned HIV-negative, my doctor called in a prescription. At Walgreens, the pharmacist retrieved my bag from the shelf, smiled reticently, and told me the price, which was somewhere north of $1,400.

I could apply for a co-pay card from Gilead, she said, and there was another assistance program I could look into. She wrote down the information. I told her I’d come back.

As I expected, because I make good money, I wasn’t eligible for the assistance program. I did the math—with my income I could absorb the cost for a month, and I hadn’t had sex in at least four—I returned to the pharmacy the following day and asked for the pills.

This time I was met by a gay pharmacist with whom I’d previously exchanged friendly banter. He made a phone call as I sat and waited. More than 10 minutes later he returned to the counter and delivered the news: He’d gotten me a discount from Gilead, but I would still have to pay around a thousand dollars.

It’s crazy they don’t cover it for PrEP, I said, referring to my insurance.

Well, I don’t know if they should, he said.

Why not? I asked.

There are other ways to protect yourself, he said.

I swiped my credit card. On the way back to my apartment, I popped a pill in the street.

I took the pill for 30 days. I had sex once. I couldn’t afford to refill the prescription, so I didn’t.

Over the next few months, I tried, unsuccessfully, to find a steady partner so that I could have a condomless sex life without fear. That seemed like my only option: I literally couldn’t afford sex with multiple partners. The truth is, though, even that option seemed suspect: Several of my HIV-positive friends had acquired the virus from boyfriends who’d cheated on them.

Then, one day, it came to me: I had another insurance policy. The one I’d used was a policy I’d bought a decade ago when I started my business, and we now used a different insurance provider for all our employees. I’d kept on using my original policy because it had worked well enough for my needs—until I started taking PrEP.

I returned to my doctor; after another HIV test came back negative, he wrote me a new prescription for Truvada. I filled it the same day, using my second insurance policy, and this time I paid nothing. It was the best experience with American health care I’d ever had.

The morning after I tested positive, I had lunch with a health counselor at a Panera Bread. Her job, technically, was to connect me to HIV care, though I’d accepted the offer more as an opportunity to talk to someone about living with the disease. I spoke of PrEP and my disappointment; I aired my fears about how my dating life would change. I’d already decided on my online-dating profiles to say up front I was positive, rather than have people ask. Better not to get messages, I thought, than to have conversations that abruptly end in silence.

That afternoon, I drank alone in my apartment. I gazed at the sky and the navy stripe of sea that encloses Miami Beach. The sting of HIV must be lonely everywhere, but sun-bleached South Florida, graced with softly hissing palms, gives sadness a particularly hollow quality.

The next day, I visited my doctor again and watched his brow furrow in surprise as I told him I’d tested positive for HIV. He ordered a confirmatory blood test and a test for viral load.

Back at my desk in my apartment, I eyed the dating apps on my phone. I received a text from a guy who’d been chasing me. I’d ignored him because of my test results, but I didn’t want him to feel I was ignoring him, so I texted. I told him I’d been slow to respond because I’d gotten a positive HIV test. He said that he still wanted to meet.

It felt great.

The following day, we watched a movie on the couch in my apartment. Partway through, my phone rang. The number looked familiar, so I picked it up.

It was my doctor. Your test came back negative, he said.

False-positive HIV tests are rare. The test I’d taken at the clinic has an accuracy rate of 99.8 percent. Still, they happen.

For me, three things stood out. First was the devastating emotional effect of an HIV diagnosis. Second was the true efficacy of PrEP. As I tried to make sense of my experience in the days that followed, I talked to a doctor in Miami who said he’d never had anyone acquire HIV on PrEP, and said the problem with PrEP is that it’s “too effective”—in other words, men are getting other STIs because they’ve stopped using condoms. I discovered a friend who was forced to buy PrEP from India because his insurance stopped paying for it. And I spoke with advocates for and against the drug in Chicago, Atlanta, and New York.

But the third thing I learned from my experience, the most striking thing, wasn’t about PrEP. It was about fear.

In study presented at the International Conference on HIV Treatment and Prevention Adherence in 2014, 50 percent of gay men reported that they thought of HIV while having sex. During one of life’s most intimate moments, men were preoccupied by thoughts of disease.

There’s a belief that people who don’t use condoms do so because they aren’t pleasurable. There’s truth to this. But for many men, condoms are also a barrier to intimacy. A recent study of African American men who had sex with men found the most common reason they cited for forgoing condom use was to be more intimate with their partners. A second study of gay and bisexual men put intimacy before pleasure as the primary reason for shunning latex. I don’t skip condoms because I’m glib about STIs; I do it because I value the intimacy that condomless sex provides.

I likely would be dead if I had come of age during the height of the AIDS epidemic. I make no bones about that. Nor do I think my attitude about condoms is salubrious to reducing the rates of other, non-life threatening STIs. But I enjoy having condomless sex, and I don’t believe I should be shamed for it.

By altering the risk level of condomless sex, PrEP disentangles intimacy from fear. It doesn’t only insulate gay men from HIV; PrEP also returns us to an era where we no longer have to regard each other primarily as potential carriers of disease.

In the 1980s, as thousands of gay men haunted the intensive-care wards of New York, battles raged over unapproved drugs and treatments. I fear we will look back at controversy over PrEP—and the “tape-a-condom-to-your-leg” mantra—as an echo of this time, an ethos that helps to spread HIV rather than to prevent it. Those who work in HIV prevention know that the majority of gay men don’t use condoms consistently—84 percent of gay men reported inconsistent use of condoms in a recent CDC study—and they also know that even a periodic break in condom use is statistically equivalent to not using condoms at all.

Will condom use decline on PrEP? Probably. Will other, non-fatal STIs increase? Perhaps. Fortunately, quarterly testing is part of the process for PrEP prescription renewal. I don’t know anyone not on PrEP who’s tested for a battery of STIs four times a year. And even if other, non life-threatening STIs increase, the health benefits of PrEP are manifold. Many men disappear from health care entirely after high school or college, so a return to care affords opportunity to reduce the costs of disease down the road.

To frame it another way, the difference between giving men condoms and giving them PrEP is the difference between giving women condoms and giving them hormonal birth control—contraceptive pills and IUDs aren’t considered contentious on the basis that women using them might get gonorrhea. Like birth control, PrEP empowers the receptive partner. It also recognizes the vulnerability of the human condition.

Recently, I had lunch with a journalist friend who came of age when funerals of AIDS victims were as frequent as rain. You don’t understand, he said. For our generation, condoms were a lifesaver. Condoms were the only thing that kept us alive. So there’s an attachment to condoms.

But would we have taken PrEP if we had it? he added. In a heartbeat.

We are so lucky. We’ve found a drug that can stop the spread of AIDS. Why are so many people still hesitant to put it to work?