Editor's Note: Guest blogger Damon L. Jacobs is a licensed psychotherapist and author in New York City. You can find out more about his unique approaches to health and wellness by visiting www.DamonLJacobs.com.
Larry Kramer, writer of The Normal Heart, is arguably the most formidable and well-known AIDS activist in history. His public record of anger, passion, and ruthless diatribes are legendary, and have garnered the respect of his followers and his detractors. His seminal work Faggots, originally published in 1978, was a scathing critique of what he perceived to be the sex-obsessed and imprudent aspects of flagrant 1970s gay culture.
So it came as no great shock when Kramer singularly dismissed the advances of Pre-Exposure Prophylaxis ("PrEP"), a daily medication that has proven more than 90% effective in preventing HIV transmission. What was surprising is that Kramer, while promoting HBO's film version of The Normal Heart, would use such bizarre and fabricated notions to express his opposition. According to Kramer:
"Anybody who voluntarily takes an antiviral every day has got to have rocks in their heads. There's something to me cowardly about taking Truvada instead of using a condom. You're taking a drug that is poison to you, and it has lessened your energy to fight, to get involved, to do anything."
As someone who has been using Truvada for PrEP daily since July 19, 2011, and has been publicly helping others learn about Truvada for PrEP during most of that time, I find Kramer's words to be naïve at best, grossly deceptive at worst. But instead of judging or scrutinizing the man, let's just focus on what is erroneous in those words.
"Anybody who voluntarily takes an antiviral every day has got to have rocks in their heads."
This statement would assume that by "rocks...", Kramer is referring to someone who is intellectually dim, judgmentally impaired, with limited decision-making skills. But in fact, the consideration to use Truvada as PrEP is extremely complex, and requires one weigh a series of factors in their minds.
This process involves asking, "Am I at risk for HIV? How do I determine what 'risk' is? Is sex that important? Can I adhere every day to a medication? Would I tell my lovers/friends? Would I tell my family? How would I ask my doctor? Would my insurance cover it? Where would I get it from? What if people think I'm HIV-positive? How would I remember to take it on vacation? What are the side effects? What happens if I forget? Where can I go to learn more information? What if my doctor judges me? What if people find out without my permission? Will I be denied life insurance? Will I be stigmatized as a 'Truvada whore?' Do I still use condoms?"
These thoughts are rudimentary in the process of using Truvada, and require one to use higher-order thinking skills. They demand that a potential consumer of PrEP learn new information, analyze pros and cons, evaluate benefits vs. risks, and then implement a new set of behavior skills. These are hardly the actions and reactions of a person who has "rocks" in their head, much less someone who would make such a decision based in haste or triviality.
"There's something to me cowardly about taking Truvada instead of using a condom."
I'm not sure when condom usage became a sign of bravery or nobility, but I can tell you with absolute certainty that using Truvada or PrEP is no cowardly feat. As The Normal Heart illustrates, it can be pretty hard for gay men to be honest with doctors and trust them with personal details about sexual practices. In order for someone to talk with their doctor about PrEP, they must be willing to make an explicit or tacit admission that they enjoy condomless anal sex. That, in and of itself, has scared many people away from using PrEP.
Then, assuming your doctor doesn't slut-shame you too much and actually writes a prescription, you have the greater joy of taking on your medical insurance company. For some on PrEP, this has been a non-issue. But for many HIV-negative people who are not accustomed to dealing with insurance plans, co-pays, deductibles, rude operators in the member services department, and arguing for the right to access their medicine coverage, obtaining PrEP can be a daunting and exhausting process.
Many then must go through an additional course of paperwork through the Gilead Co-Pay Assistance program -- not at all recommended for the faint-hearted.
Finally, if you obtain the medicine at a reasonable cost, you then have the added thrill of either dealing with your friends' and community's judgments, or staying completely in the closet. Many on my PrEP Facts Facebook page have lamented the disapproving shame and ignorant rage they have encountered upon disclosing their decision to use PrEP to others.
The stigma against those who use PrEP is palpable and present. It is obvious in the name-calling of "Truvada Whore," (which has since been taken back as a label of empowerment and solidarity amongst PrEP users). It is less obviously in the disapproving looks, the dismissals as "promiscuous," and the rejection from potential dates that some people receive upon disclosing. These reactions, dear reader, are not for the spineless or thin-skinned.
"You're taking a drug that is poison to you."
One generally thinks of "poison" as something that kills, tarnishes, or seriously damages. That certainly has not been the case with use of Truvada as PrEP. Side effects are rare and have all been reversible. As a matter of fact, on the same morning Kramer's words were publicized, so was a study that demonstrated there has been no irreversible kidney damage from using Truvada as PrEP.
Most people who use Truvada as PrEP experience no side effects whatsoever. One could say that you need rocks in your head to dismiss an effective prevention strategy as "poison" when there is no evidence to support that.
"It has lessened your energy to fight, to get involved, to do anything."
Clearly Kramer hasn't gotten out lately. My PrEP-O-Licous! event in New York City had over one hundred attendants last February (in a snowstorm, no less). Two weeks ago, even more people packed into a room at GMHC to attend the first of four "PrEP Rally" events. There are more people getting involved every day through social media and local organizations to help the education and implementation of PrEP.
If anything, using PrEP has reinvigorated my own activism that had become relatively lackadaisical by the 2000s. In reaction to the organizational apathy that typified the gay community's response to PrEP, I created a Facebook group that would allow anyone anywhere in the world to have access to the science, research, data, and opinions about PrEP. Over 2700 individuals have joined the group since July 2013.
One can look through the recent debates and read that people's energy is hardly passive, sedentary, or alienated. On the contrary, I see more involvement, engagement, and fiery passion about PrEP than any other medical issue in the past decade.
Clearly, using PrEP doesn't make anyone dumb, cowardly, or apathetic. PrEP has awakened and electrified a passionate, intelligent, and spirited fight amongst activists, medical professionals, healthcare providers, and social leaders that calls upon consumers of PrEP to become educators, advocates, and at times, peacekeepers.
Perhaps in time Kramer will find a way to recognize the efforts of those who have become more engaged in their communities because of PrEP, and the thousands who are working to change the minds and "normal hearts" of people like him.