In 2014, the Internet began to froth and boil with articles, websites and commentary about Truvada (tenofovir/FTC) as pre-exposure prophylaxis (PrEP), the newest HIV prevention tool. The drug had been available for prescription to HIV-negative people for two years, but only last year did it become possibly the biggest topic in the HIV prevention conversation.
"How could we have a medical tool to end HIV transmissions, have support of legislators around the U.S., insurance coverage, support from the CDC, WHO, and HRC, front-page coverage on The New York Times and still people don't know about it?" That's the question posed by New York City psychotherapist and PrEP educator Damon L. Jacobs, administrator of the Facebook group "PrEP Facts: Rethinking HIV Prevention and Sex."
As gay, bisexual and queer men and transgender individuals get more familiar with the drug, new possibilities continue to open up for us. Even so, the general heterosexual community has shown little excitement over this breakthrough -- even a widespread ignorance to the treatment's very existence.
During a visit to my Seattle clinic to get cleared to take Truvada as PrEP, I made nervous small talk with the phlebotomist as she slipped a needle into my vein. PrEP would only be prescribed once I tested negative for HIV and hepatitis B and showed healthy kidney function. In the intimacy of the blood draw, I talked about how excited I was to begin PrEP. The tech wasn't familiar with the term, and as I recall she also didn't know the drug name Truvada. This is understandable -- it's not a lab tech's job to be familiar with every prescription medication. However, I thought it unusual at the time that a medical professional wouldn't know the name of a powerful drug that prevents the transmission of HIV.
I continue to think it's odd, in the four or five times I've had my blood drawn since then, that not a single medical professional drawing my blood was familiar with PrEP. Weekly, it seems, I continue to encounter people working in the medical field who have no clue about it. If our medical professionals have such little knowledge of it, even in a highly liberal and heavily queer city like Seattle, that bodes ill for the general public.
Do we live in a world in which the daily prevention pill for HIV -- a global pandemic that has afflicted almost 78 million human beings of all ages, races, sexualities and genders -- is just kind of not a big deal?
In one word: Yes.
We live at a time when the most effective measure ever invented for preventing HIV has flown under the radar of the general American public, and it's being ignored by many in the gay community, too.
Jacobs cites a combination of homophobia, sex-negativity, politics and "the simple human reluctance to change."
"I think there is a level of willful denial that gay people are having sex, much less anal sex. You can let them get married, but you can't let them enjoy sex with one or more partners," Jacobs said.
Though anal sex is a part of straight American culture, it's still a highly stigmatized act. Anal sex, and gay male sexuality by extension, is often seen as dirty, painful, dangerous and emasculating.
But Jacobs doesn't simply throw the straight community under the bus -- he's equally critical of the gay community's ignorance of what PrEP is and what it does.
"There is a complacent denial amongst gay and bisexual men who don't know about PrEP. They may spend time focusing on advances in marital equality, but are shut down to progress in sexual pleasure and freedom. They may be up-to-date on issues affecting Obamacare, but couldn't care less about preventing HIV."
Chris Nelson, a gay man and registered nurse living in Anchorage, Alaska, first heard about PrEP two years ago from some of the Sisters of Perpetual Indulgence, a movement of drag queen nuns who preach sexual health and queer pride. "I was surprised that I hadn't heard a word about it during ... work in the hospital," he said.
Although PrEP is a relatively recent development in HIV prevention, the fact that Nelson heard about it from his gay peers before his professional colleagues at the hospital demonstrates a clear lack of discussion outside the gay community. He vacillated on whether to get on the medication until recently, due in no small part to the amount of contradictory information floating around and the fiery debates about the drug's effectiveness.
Now, Nelson has made up his mind. "I started PrEP on Jan. 1, 2015, as a New Year's resolution: I will protect my health."
Other friends, particularly straight friends, hadn't heard about PrEP until I informed them. Heather Snookal, a Seattle-area science teacher, was surprised and concerned that she'd never heard of a breakthrough like PrEP until this year. She has since begun integrating PrEP awareness into her sexual health lessons with students.
Mariah Crystal Ortiz, who recently worked in the Peace Corps in Namibia, hadn't heard of PrEP until last November, after returning to the U.S. During her time in Namibia, she worked directly with HIV-positive people receiving antiretroviral treatment. According to UNAIDS, it is estimated that roughly 14% of adults aged 15 to 49 in Namibia are HIV positive, though that rate could be as high as 17.3%.
While Ortiz believes that "free [antiretrovirals] help uphold the basic human right to health," she found that "there is some debate in Namibia about whether providing free [antiretrovirals] promotes careless behavior."
She added, "Learning of the use of Truvada [as PrEP] makes me wonder how it would affect the HIV transmission rate in Namibia if it were also available to people there for free."
In some cases, Americans without insurance can get PrEP at no cost here in the U.S. from Gilead, the drug's manufacturer. You read that correctly: The company is giving the drug away at this time to qualifying applicants, and yet there are millions of people who have no idea this drug exists.
In the state of Washington, some get the drug for free through a state drug assistance program that covers insurance copays or even the entire cost of the drug, depending on need. Similar programs will soon be popping up in other areas.
"Some states and localities are actively working to connect people to PrEP, including Illinois, New York state and city and San Francisco," according to David A. Kern and Richard Aleshire. Kern is the manager of the infectious disease prevention section of the Washington State Department of Health, while Aleshire is the HIV client services program manager within the same DOH. Washington residents have these men and their teams to thank for the drug assistance program in our state. The two of them work closely and collaborated on their answers to my questions.
"We think [the continued lack of public knowledge is] a function of the newness of PrEP. We don't imagine most communities have followed PrEP developments over the years ... Since PrEP hit the mainstream media last year, we've seen a measurable increase in awareness, and we anticipate interest will continue to increase," Kern and Aleshire assert.
"It may have something to do with 'AIDS fatigue' in general," Kern and Aleshire stated. "People do not show as much interest in anything related to HIV/AIDS as they used to."
To better promote awareness of the availability of PrEP, Kern and Aleshire are working on four fronts: community partner education, health care providers, public health activities and interventions, and insurance/payer relations, which include the drug assistance program to cover the cost of PrEP.
Kern and Aleshire have a clear philosophy of treatment: "We need to move outside of our separate 'prevention' and 'care' boxes and see the whole continuum, the whole person and provide services both to people not yet infected and those who are, without having to rely on the specific stream of funding."
Ultimately, the answer to the question of why more people don't know that PrEP exists isn't completely cut and dry. No question that huge usually is. However, this big issue leads us to the even bigger elephant in the room: Have people found more enticing issues to care about than ending the HIV/AIDS crisis? Maybe it's terrorism and war, or the global economy or the escapism and schadenfreude of Twitter and reality television. The "AIDS fatigue" that Kern and Aleshire point to as one factor is much more common than many people would suspect.
Have we entered a post-HIV world without finding its cure? The tragic irony is that PrEP, a simple daily pill that requires no awkward conversation or negotiation with sex partners, is the most effective HIV prevention measure that most people have never heard of.
Evan J. Peterson is the author of Skin Job and The Midnight Channel and editor of the Lambda Literary Award finalist Ghosts in Gaslight, Monsters in Steam: Gay City 5_. His writing can be found in_ Weird Tales_,_ The Stranger_,_ The Rumpus_,_ Glitterwolf_,_ The Queer South anthology and Drawn to Marvel: Poems From the Comic Books_. He is the current editor-in-chief of Minor Arcana Press. You can find him at his personal website._