Thembelani Sibanda (above) says he's proud to be taking PrEP. (Photo by Daniel Born/The Times/Gallo Images/Getty Images)
By the time I got back to my hotel room after the Centers for Disease Control and Prevention Conference in Atlanta ended last week, I was on a high. I learned more details about the new U.S. plan to end the HIV epidemic and for the first time in my career, it feels like there's concrete and realistic plan to bring down new transmissions by 90 percent in the next decade.
PrEP is a central part of this plan, as it is a proven strategy to prevent HIV by reducing risk by more than 99 percent.
I came back to my room that night and saw that my PrEP Facts group was blowing up because of a news story coming out of Australia claiming an individual acquired HIV while using the “on-demand” PrEP strategy. My first thought was, “Why are they making a thing out of this?”
Within hours there were hundreds of comments and replies mostly expressing worry, trepidation, and apprehension about PrEP’s efficacy. People wanted to know why this happened. They wanted answers, insights, data, and science that generally take years to accumulate, study, and verify. In this case we had none of that information, just the self-reporting of a single man. I continued to read the comments, answer the questions as best as I could, the whole time baffled by the collective anxiety and horrified by the media’s attempts to stimulate people’s fears and doubts about PrEP and the verified on-demand dosing strategy.
I began using the daily PrEP regimen on July 19, 2011. Even after the FDA approval in 2012, the people who needed PrEP the most were not learning about it and new HIV infection rates in the U.S. remained stagnant. Furthermore, most of the information available online was coming from a certain organization that was decimating unscientific data or intentionally misleading information about PrEP’s efficacy and safety, seemingly with the intentions of deterring consumer uptake.
As a response to this dearth of accessible or empirically-driven information, I began a group on Facebook on July 1, 2013 called, “PrEP Facts: Rethinking HIV Prevention and Sex.” The main rule is that people had to be fact-based and data-driven in their claims about PrEP and not just throw around random and inaccurate facts about rates of seroconversions, bone factures, kidney deteriorations. I welcomed questions, concerns, and fears — not lies, mistruths, nor personal anecdotes as established “facts.”
For some, this prioritizing of science was a welcome breath of fresh air on a social media platform that otherwise lends itself to unsubstantiated claims, rumors, drama, and interference from foreign entities. For others, this focus on medical research and validated facts was met with resentment, suspicion, and a perception of insensitivity toward individuals who may have acquired HIV while using PrEP. It has always been a delicate balance of respecting individual claims while prioritizing scientific evidence in order to ensure that people make the most informed sexual health decisions possible.
To that end, I have always used the science and data to explain that PrEP reduces risk of 99 percent or more when taken as prescribed. Up until 2015, the only proven regimen had been daily use. By 2018, we had several studies that showed that using the regimen in a very planned and structured way — but less than daily (what we now call “on-demand”) — also appeared to reduce individual risk of acquiring HIV by 99 percent or more.
The only difference was that this latter option had to be used within certain time frames, within a certain structured protocol, requiring that a sexually active person be very mindful, scheduled, and conscience about their use. Whereas the daily method allows for the drug to build up in one’s system over time leaving “permission” for time adjustments and some missed doses.
Nevertheless, within these somewhat stringent requirements, the on-demand dosing strategy appeared to be a reliable and validated way of reducing risk by 99 percent or more. In every research study to date, not one single HIV transmission occurred among those documented to be following the on-demand schedule. And up until last week, there had not been a single report even from the general public.
Now a 27-year-old man in Australia is saying he acquired HIV while using the on-demand dosing regimen. Is that what happened? If so, did PrEP fail in this instance?
Sadly, It appears we will never have adequate data or scientific evidence to determine that answer. Outside of the strict monitoring involved in research trials, it's rarely possible to determine beyond doubt how a specific HIV transmission occurred. Even the individual in this case acknowledges, "because we don’t know the precise time or circumstances of my seroconversion, we cannot know, with absolute certainty, how I got HIV, and I will probably never truly know.”
As a therapist and human being I am sensitive to the pain, trauma, and struggle of this experience, and speaking publicly about it. I believe this individual deserves compassion, respect, and support from everyone as he adjusts to this unexpected outcome. He is under no obligation to publicly share more aspects of his private life beyond the accounts he has already chosen to discuss.
At the same time, scientific inquiry doesn’t cease just because someone stops giving interviews. Everything we know about HIV treatment, prevention, vaccines, or cures is contingent on people sharing pertinent facts after an adverse outcome. In this context, medical questions are not accusations, or invasions of privacy, they are relevant and necessary exchanges in determining the facts of the situation. Ultimately these kinds of research inquiries lead to insights that can improve PrEP guidelines, shape prescribing regimens, and improve consumer safety. But if these questions aren’t asked and answered, nothing can be learned.
As far as I can see there are only two possible scenarios about what actually took place: Either the Australian man used PrEP following the structured on-demand regimen in every sexual encounter exactly as prescribed and acquired HIV anyway, or he did not consistently use the drug as prescribed and acquired HIV anyway.
In either case, this one report changes nothing about how we understand the efficacy of on-demand PrEP dosing. Any ambivalence about either scenario will not alter the way that I, or any other science-driven educator, will communicate, inform, and support PrEP uptake.
In part, that is because none of us has previously cliamed that PrEP is 100 percent effective, or that acquiring HIV while on PrEP is impossible. There will alwasy be a very small percentage (less than 1 percent) of people who take PrEP religiously and still become HIV-positive. Yet while there are now over 380,000 people currently taking PrEP, there have only been a handful of documented cases in which someone has contracted HIV while following the protocol as prescribed.
As I returned home from the CDC conference, I read an article about New Zealand’s swift reaction to altering gun control laws only six days after the senseless slaughter of 50 individuals attending mosques. I am reminded that we have an average of 138 violent gun incidents per day in the U.S. with very little hope for change in near sight. Going to a movie theater, a religious gathering, a music concert, a high school, or just walking down the street, carries more risk to me than getting HIV while using on-demand dosing.
This one self-report of HIV on PrEP does nothing to change that. Perhaps it’s time to shift our focus away from sex-driven terrors and apply constructive energy and action toward the real dangers threatening our safety every single day.
Damon L. Jacobs is a New York-based licensed marriage and family therapist and HIV prevention specialist who focuses his work on health, love, Social Justice and pleasure. He is best known for championing the use of HIV pre-exposure prophylaxis (PrEP) through his work in the media including MSNBC, NPR, Vice TV, Here! TV, as well as The New York Times, USA Today, Out magazine, and many more.