Way back in the mid-’90s, I tested positive for HIV and started writing about my experience for a pre-internet Chicago queer zine called Babble, and then called Gab—not to be confused with current online platforms using these names. POSITIVELY AWARE associate editor Enid Vázquez, a force of nature who has been with the magazine literally forever, took notice and charmed me into writing a semi-regular column for the magazine featuring my ramblings, bloviations and screeds cleverly called “Pickett Fences.”
What a treat it has been, then, to be brought back into the cozy, warm folds of POSITIVELY AWARE and to collaborate with editor-in-chief Rick Guasco and guest co-editor Kenyon Farrow on this very special issue.
Before I could pronounce the word “microbicide” I got hooked on HIV research that was exploring novel ways to prevent infection. In 2005 I co-founded a global advocacy network called IRMA to demand greater investment into the development of rectal microbicides—products such as lubes or douches that could prevent HIV right where the action is for people who enjoy booty sex.
And there are a lot of us!
While we have learned that delivering an HIV prevention drug via “booty butter” (lube) is probably never going to make it to prime time, I am doing cartwheels and high kicks (in my mind) knowing that the HIV Prevention Trials Network (HPTN) is moving forward a rectal douche concept that pairs hygiene and ARV drugs into a potential new, “behaviorally congruent” means of HIV prevention. It’s a fabulous idea that has been studied for years by visionaries at Johns Hopkins led by Dr. Craig Hendrix, and I am hopeful that the Phase II study the HPTN will launch in 2024 leads to efficacy studies and licensure and super deluxe rectal douches that prevent HIV and leave you feeling clean as a whistle, in every bathroom cabinet.
When I tested positive in 1995, I thought I had 10 years left. Almost three decades later, I am still here—thanks, science and yes, thanks to pharma as well. The world has witnessed dramatic improvements in HIV treatment, and in the last decade plus we have revolutionized HIV prevention—never again will condoms be our only choice to prevent the sexual acquisition of HIV.
Today we have options for both treatment and prevention that involve a handful of injections every year—no pills—and there are improved injectable modalities undergoing rigorous development. There are also long-acting pills, implants, films, and yes, rectal douches in the research mix.
Choice is the name of the game
I’ve long been a vocal critic of the NIH’s research agenda, which has devoted most of its HIV prevention research dollars into studies developing systemic, long-acting, longer-acting, and even longer-acting-still drugs and delivery systems that attempt to remove the messiness and irrationality of the human condition from the equation. For me, the focus is too narrow, the focus removes individual agency, the focus limits true choice. The focus also falls prey to magical thinking, as if a fancy new injection will make everything better. LOL. As if.
That said, I love that we have options that provide protection for long periods of time that don’t require daily behaviors. I love that we have options that mean people living with HIV don’t need to be tethered to their pillbox forever and ever. Talk to me when we have a treatment shot that can be given twice a year, or less, and I will be first in line.
We must have an equity-focused, community-led agenda that recognizes the diverse needs of a wide array of races, genders, sexual identities, sexual preferences, ages and communities.
But everything can’t be about longer and longer-still when we imagine the future of HIV prevention. We need prevention options that are short-acting, we need prevention options that don’t require a trained clinician to deliver, we need prevention options that stay where you put them—where the action is and nowhere else. Not all HIV-negative people who are seeking options to maintain their sexual health want drugs coursing through their entire bodies for long periods of time when they could have drugs exclusively focused on their front or back doors—where sexual transmission actually occurs—for limited and discrete amounts of time, determined by the individual.
It is imperative we collectively demand a robust choice agenda. Such an agenda considers different drugs and delivery modalities and doesn’t defer to only long-acting and systemic options. We must have an equity-focused, community-led agenda that recognizes the diverse needs of a wide array of races, genders, sexual identities, sexual preferences, ages and communities; that recognizes human rights and bodily autonomy; that places a premium on pleasure and that truly listens. We need fulsome implementation choices (“differentiated service delivery”) and we need to banish once and for all the shiny-new-thing phenomenon (magical thinking) that seems to come along with any new technology.
It is imperative we hold governments, other funders, the research establishment, pharma, organizations, policy makers, program implementers, advocates and each other accountable for this choice agenda. And we need to do this work with equal amounts integrity, vigor, savvy, resilience, perseverance, courage and thick skins.
Are you with me?
Jim