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 funding, structural inequality, failures to reach vulnerable populations, insufficient sexual-health education, lack of condom access, limited knowledge of PrEP or U=U, too few testing sites, cultural incompetence, or ignorance about HIV transmission and behavioral risk.
All of those things matter. They have been studied, debated, funded, programmed, and written about ad nauseam.
There is also what I think of as the tumultuous triangle of stigma, shame, and self-denial: a cultural phenomenon sui generis that cannot be solved through biomedical intervention alone and must be confronted at an anthropological level.
Yet even after decades of interventions aimed at all these factors, HIV continues moving from one body to another and from one social network to the next. It navigates communities with remarkable persistence.
At times, it almost seems as though HIV understands diversity better than we do. Once transmission is reduced within one population, the virus appears elsewhere—within another community, another network, another configuration of vulnerability. It remains perpetually ahead of the institutions attempting to contain it.
There is, however, another possible explanation....one that connects directly to what I have previously written here about Molecular HIV Surveillance (MHS) and Cluster Detection and Response.
Until now, I have focused primarily on what these systems do and on the ethical questions surrounding them. I have spent less time asking another, perhaps more important question:
Why is this information so valuable?
Why has HIV become one of the most intensely surveilled viruses in the world?
People living with HIV routinely produce extraordinary quantities of biomedical information through ordinary medical care. Much of that information collection cannot meaningfully be separated from treatment: participation in the healthcare system is necessary to receive the medications that keep people alive.
The resulting information can include viral load, laboratory values, serum measurements, treatment histories, demographic information, behavioral information, and, importantly, viral genetic material.
I have already written about the ethics of this system. My concern here is different.
I want to examine its value.
Why is this biological and social information so useful? Why are people living with HIV—and HIV-negative people classified as being at elevated risk for seroconversion—such uniquely valuable populations for large-scale information gathering?
What makes these populations especially useful for understanding disease, behavior, networks, and transmission in ways that populations affected by many other diseases are not?
HIV offers something extraordinary from the perspective of surveillance.
There is not a single inhabited continent untouched by the epidemic. HIV has crossed nations, political systems, cultures, races, classes, sexual networks, drug-use networks, migration routes, and nearly every other boundary through which human beings organize themselves.
Its effects extend far beyond virology. HIV has reshaped medicine, sexuality, law, public health, activism, civil society, identity, and global governance.
So the question remains:
Why HIV?
What is unique about those of us living with HIV—and those categorized as being at risk for acquiring it—that allows governments, nongovernmental organizations, researchers, pharmaceutical institutions, public-health agencies, and extraordinarily wealthy global actors, despite their many competing interests, to repeatedly converge around this one epidemic?
What is it about HIV that allows these institutions to coalesce around the great political theatre of “Ending the Epidemic”?
This series begins with a possibility I believe deserves serious examination: that people living with HIV, and those considered at risk for HIV, have become part of an enormous natural experiment—one capable of revealing something far larger than HIV itself.
HIV surveillance may offer a way to understand virological social networks: the relationship between viruses, human behavior, social organization, information, ideas, and the networks through which all of them move.
A virus moves through networks.
So does information.
So do behaviors.
So do ideas.
And increasingly, the technologies used to map one can illuminate the others.
That possibility fundamentally changes how we should understand the value of HIV surveillance.
It is a brilliant project.
It may also be a profoundly dangerous one.
History, after all, is filled with brilliant systems whose capacity to produce knowledge exceeded their capacity to respect the people from whom that knowledge was extracted.
This introduction is only the beginning. In the essays that follow, I will develop this argument in greater scientific detail and with greater empirical precision, examining what HIV surveillance can reveal, why that information has become so valuable, and what may actually be happening behind the curtain of the global performance we call “Ending the HIV Epidemic.”
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