Pill-ow talk

New drug option may change the face of HIV

By Ben Tomkins

Photo: Truvada is now available by prescription as the first true preventative HIV drug.

It’s a big world out there.

We live in a society that is embracing new groups of people into the mainstream on an unprecedented scale since the Civil Rights Act of 1964. It is a testament to our culture that we have stopped asking “why” a person identifies themselves somewhere on the socio-sexual spectrum, and simply started listening. I am proud to be alive in these times. However, while sexual expression is exploding, sexual health openness has not followed suit.

While it may be far easier to walk out of the closet, we have done little to make it easier to walk in the doorway of a sexual health facility. To be clear, none of the above has led to a decline in overall sexual health; if anything, a culture of sexual openness can only lead to dialogue. But despite being more treatable, preventable and manageable than ever before, the general public still views HIV as a socio-sexual paradigm of taboo and fear that is keeping many people in the dark about the facts.

It’s important to think about your choices and know your options.

And yet, for the past four years, there has been a new HIV protocol flying inexplicably under the radar of the mainstream public that has the potential to fundamentally alter the HIV landscape. PrEP, an acronym for “pre-exposure prophylaxis,” has become synonymous with the antiretroviral HIV cocktail Truvada™, and is now available by prescription as the first true preventative HIV drug, in addition to its role in post-exposure prophylaxis (PEP).

Since 2005, Truvada, in combination with Raltegravir, is the main pharmaceutical line of defense against HIV. The drawback is, although highly effective, it has to be administered within 72 hours of exposure in order to actually prevent HIV rather than just reduce a viral load, and even then it is in no way shape or form a “morning after pill.” While accidental exposure in an emergency room is a no-brainer, in terms of sex, three days is not a long time unless you’ve got a good reason to believe there’s a problem.

But in 2010, the iPrEx clinical trial published in The New England Journal of Medicine blew the doors of HIV prevention wide open. For the first time, the scientific community had hard evidence that Truvada offered around-the-clock HIV prophylaxis, and when taken seven days a week it is 99 percent effective for preventing the transmission of HIV. I will repeat that:

PrEP is 99 percent effective for preventing the transmission of HIV.

Subsequent trials added brick and mortar to iPrEx, and Kaiser Permanente’s 2012-2015 study of gay men in San Francisco did not record a single HIV-positive case despite the city’s above average STD rate. Across the board, the single largest variable was how consistently participants took Truvada. Those who took it every day were virtually immune, whereas missing multiple doses drastically reduced efficacy.

The importance of adherence cannot be overstated. Anyone who takes medication on a regular basis had probably missed a dose here or there without problems, but HIV bears special complications because of its viral mechanism and fluid-borne transmission. Internationally there have even been many trials that have had to be ceased altogether due to lack of adherence. Also, in all of the above studies, participants were given condoms, received sexual safety counseling and had regular follow-ups. Now that PrEP is available through prescription, we are confronted with a new and fundamentally altered sexual landscape that must be navigated by first-generation participants.

As it turned out, a participant was easy to find; he approached me. I didn’t even know PrEP existed and he knew I could write, but for him to open up to me about his sex life out of the blue struck me as slightly out of character.

“Chris” has been on PrEP for the past 11 months. He is a successful, gay man between 30-45 who is in a committed relationship. After giving me a general overview, I asked him the most natural question:

“How much does it cost?”

A 90-day supply of Truvada from his mail-order pharmacy is exactly $3,802.61.

Ouch. That’s basically rolling up a few $20s and change and eating it for breakfast every day. On the bright side, a generic may be available in as soon as six months.

Despite the expense, many insurance companies are getting on board. The message is loud and clear that more and more people want PrEP, and many crucial state and business sector entities want them to have it. As for Chris, PrEP was about far more than financial sacrifice for safer sex.

“It’s a positive choice I’m making for my health,” he explains. “It’s interesting that tackling the issue of protection against HIV head-on has made me more willing to take responsibility for all of my choices, including sexual behavior in general. Taking Truvada is empowering, and being empowered helps me act more responsibly in many different ways.”

After about 30 minutes, I finally had to ask the question that had been gnawing at my curiosity. “That’s a lot of money and you’re in a relationship … does your partner have HIV?”

“Nope. Not at all.”

I began to ask about the obvious elephant in the room, but stopped short.

“So … why?”

Just because the door is open doesn’t mean you’ve been invited in for a cocktail.

Fortunately, the invitation for PrEP has been extended in earnest in Ohio. PrEP services are already available in Dayton through a state-wide organization called AIDS Resource Center Ohio (ARC Ohio), and the ARC Ohio Medical Center Dayton offers walk-in HIV testing, counseling, and has helped to lead the charge for PrEP awareness and the implementation of PrEP services for Dayton residents. Recently, ARC Ohio was the recipient of a nearly $1 million federal grant to continue to develop HIV and AIDS services in Ohio, and continues to be a model organization for the rest of the nation.

In other words, Dayton residents are very, very lucky.

It is estimated that there are 1,700 people in the Greater Dayton Area who are currently living with HIV, thousands more who could benefit from more information, and ARC Ohio has made it its mission to serve as many people as they can get to walk through the door. Unfortunately, stigmatization and shame are still huge hurdles for people who want to take control of HIV and HIV prevention in their lives.

“The stigma around HIV is still the hugest, still to this day, barrier to care, people seeking care, people seeking to find out their status,” says Jeffrey Chiles, manager of the Dayton ARC Ohio center, on the dynamics of HIV prevention.

This is exactly why ARC Ohio is dedicated to “a holistic approach to address the physical, emotional and social needs of those living with HIV and AIDS in a way that brings hope, healing and empowerment.” Mental health is as vital to treatment as chemical management, and participating in dialogue charged with implication instead of positive health choices only increases fear and shame.

This is especially important today, as the concept of “political correctness” has been politicized in this season’s campaigns. Political correctness isn’t about bending over backwards for touchy people, it’s about realizing that how we speak changes lives. Talking to your own partner about sex can be difficult enough, and when the society around you is intransigent and constantly reinforcing stigmatization, it can literally be fatal.

Although PrEP has been a revelation to the gay community as MSM tend to be at higher risk, PrEP is equally effective for heterosexuals and IV drug users.  One of the great myths that still persists is that HIV is largely a homosexual disease. “Susan” is a heterosexual woman who has been HIV positive for 27 years and married for the past twelve. She is currently taking Truvada as well as other drugs to manage HIV, and when PrEP became available she and her husband considered starting him on Truvada because he is HIV negative. Straight men and women as well as lesbians and IV drug users (interestingly, the most responsible and consistent PrEP adherence demographic) who engage in behavior that carries risk would benefit equally from beginning PrEP prophylaxis, and ARC Ohio serves the entire socio-sexual spectrum.

Ultimately, the most important counseling services will come from the public at large, by elevating the language we use and our mindset about HIV. Health is about the future, not the past. “How did it happen” is a common question, but dwelling on the past doesn’t offer anything to a person with HIV in their life.

That’s the kind of health ARC Ohio is all about: moving forward from a moment, and taking control of your life. We have to make addressing HIV issues and options for prophylaxis like PrEP something to celebrate, not to hide in the medicine cabinet. Speculation and language that creates stigmatism about people’s history or their health choices closes doors and lips. Most importantly of all, we must never contribute to the idea that someone’s yesterday ruined all his or her tomorrows; they are just HIV-positive.

Positive.

Because the worst feeling in the world is not knowing.

I often found my mind returned to Chris, and why a man in a solid relationship would be taking PrEP. I realized the biggest language shift PrEP progress needs is the question I almost asked him:

“Why?”

What right did I have to ask? What right did I have to even speculate? There could be any of a million reasons why he’s taking it, but the bottom line is it’s none of my goddamned business. Speculation is a social disease that is far harder to cure than HIV is today now that PrEP is here. A society (not a partner or doctor) that stops short of “why” is doing no less than keeping themselves out of my bedroom, a gay couple’s bedroom, a transgendered person’s clothes and a gender queer person’s mind.

The most urgently needed HIV medication protocol is one that treats a public mindset that licenses itself to judge a person who, ironically, is improving our overall public health. An educated, respectful and openly supportive public is the difference between in and out the door—be it for a test, a prescription or even a question and a free condom—because a person who trusts us when we say “You are a good person and model citizen—full stop” is someone truly empowered to take control of their health.

PrEP is here, 99-100 percent effective and publicly available. If we as a society support HIV health organizations and encourage friends and strangers alike to take control of their health, HIV may be the polio of the 21st century.

Visit thebody.com for online HIV information and forums. For local support, testing and information, visit AIDS Resource Center Ohio at 15 W. Fourth St. #200 in Dayton, or arcohio.org, or call 937.461.2437.

Ben Tomkins is a violinist, teacher, journalist and critically acclaimed composer currently living in Denver, Colorado. He hates stupidity and generally believes that the volume of one’s voice is inversely proportional to one’s knowledge of an issue. Reach Ben Tomkins at BenTomkins@DaytonCityPaper.com.

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Ben Tomkins
Ben Tomkins is a violinist, teacher, journalist and critically acclaimed composer currently living in Denver, Colorado. He hates stupidity and generally believes that the volume of one’s voice is inversely proportional to one’s knowledge of an issue. Reach Ben Tomkins at BenTomkins@DaytonCityPaper.com.

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