On Spectacle, Institutional Mythmaking, and the Politics of an Epidemic That Refuses to Disappear After more than a decade of working in the HIV milieu, I have come to accept something I once resisted: there will be no end to the HIV epidemic. More than that, I have begun to question whether “ending the epidemic” was ever a realistic goal at all. Perhaps the promise of an ending has always been a myth—one that, paradoxically, helps sustain the very systems through which the epidemic continues. Conspiratorial thinking notwithstanding, the United States—and, from there, much of the world—will almost certainly fail to achieve the major HIV goals established for 2030: dramatic reductions in new infections and HIV-related deaths, alongside viral suppression for nearly everyone living with HIV. But why? I do not believe the answer is simply that powerful people want “us” dead. Nor is it because we lack the infrastructure to treat and prevent HIV. It cannot be explained entirely by inadequate...
A patient consents to HIV genotyping because their physician needs the information to select treatment. The patient is never meaningfully informed that the viral sequence will also enter a government surveillance system. Their sequence is subsequently identified as part of a rapidly growing molecular cluster. Public-health officials then use that classification to decide where and how to intervene. The individual never consented to having their clinical specimen repurposed to map their relationship to a population-level transmission network. This creates a provocative comparison with conventional research ethics. If I recruited 5,000 people living with HIV into a university study, collected their viral sequences, linked those sequences to demographic and epidemiological information, constructed molecular clusters, and evaluated interventions based on those clusters, an IRB would scrutinize questions of consent, risk, privacy, data governance, and protection of participants. Yet when so...