One of the people for whom the memory of the epidemic’s darkest days is still fresh is Craig Lenti, a New York City-based media producer.
Lenti moved to Manhattan in 1996 at age 18 to attend college, one year after AIDS deaths peaked in the United States. He said he learned about homosexuality and AIDS at the same time, and during his late teenage years, AIDS was the top killer of young American men.
“They were always, for me, intrinsically linked,” Lenti said. “That was what I had in my head. That is what the media told me. And so from that point on, there really was no way of disconnecting those two concepts.”
For years, Lenti avoided taking an HIV test because of his fear that it would return positive.
To this day, Lenti said, it is hard for him to take an HIV test and to trust potential partners because of his fears from the epidemic’s early days.
“It was a foregone conclusion that I would become infected,” Lenti said of his thinking at the time. Yet despite all that worrying, he remains negative.
“I think the biggest fear that I had about HIV was not the fear of being sick. It was always the fear of dying alone,” Lenti said. “It’s just very hard for me to trust people, and I think you could argue that a lot of that stems from my fear of becoming infected, even though now there’s so many different ways to combat that.”
‘I don’t think it just changes overnight’
While Lenti no longer takes Truvada for PrEP because he suffered from its rare gastrointestinal side effects, he said he counsels many of his friends to take the daily medication.
“If you can take a pill that has a 99 percent effective rate, why wouldn’t you do that?” he said.
However, most at-risk Americans aren’t taking PrEP for a variety of other reasons — its high cost (a 30-day supply could cost $2,000), privacy fears and worries that the drug is dangerous (a misconception fueled in part by online ads widely criticized as deceptive). According to the CDC, PrEP is only reaching 18 percent of the 1.2 million Americans recommended to take it, and so HIV anxiety persists to this day for hundreds of thousands of gay men.
Levi, a 19-year-old college student in Ohio, is among the nearly 1 million Americans recommended to take, but not taking, PrEP. Because he’s a man who has sex with other men and is 28 or younger, he’s considered at high risk of contracting HIV, according to the CDC risk assessment worksheet for doctors (the worksheet is based on a point system and uses a variety of risk factors).
Levi is no stranger to HIV anxiety. He recalled a recent incident after he performed oral sex where he began to worry, “Do I need to get a test?”
“I spent the night basically in a hypochondriac fit running around looking if there are any sort of symptoms I should be looking for,” he said, telling an all-too-common tale. However, he needn’t have worried, as there is “little to no risk” of acquiring HIV through oral sex, according to the CDC.
Levi, who asked not to have his full name printed because he is still on his parents’ insurance and worries they would object to PrEP, said he’s just starting to think about taking the HIV prevention pill. He said the man he is dating is HIV-negative, and even though they plan to be monogamous, he doesn’t know if he can fully trust him, because the stakes are so high.
“Is there anything that I could even ask for?” Levi wondered. “Could you show me a paper or something? And could I even believe that?”
Levi’s struggle to answer this question is as old as the virus, Halkitis said.
“You have two sets of problems: a generation that has no clue and hasn’t seen death,” he said, “and a generation that is older that is completely bombarded.”
“I think there’s a whole negotiation morphing period going on right now as we get embedded in these technologies more and more,” Halkitis continued, referring to HIV prevention medications. “I don’t think it just changes overnight.”