The Cycle We Pretend Not to See

by Rynn Myles

There is a pattern in HIV work that most people feel long before they can name it. It shows up in clinics, research protocols, policy conversations, and in the ways communities talk about help that does not actually help. In the last blog, I dug into how stigma becomes institutionalized through data, policy, and funding. This installment picks up that thread and turns it toward the bigger structure. I want to untangle the cycle that stigma creates: the way it traps real people in predictable patterns, and the way the field keeps repeating those patterns even while claiming progress.

The cycle is not subtle. It is loud, heavy, and fully woven into our public health systems. But because it protects existing power, it is rarely named for what it is.

What I want readers to sit with is simple: stigma is not an idea. It is a system. It is predictable. It is teachable. And unless it is interrupted, it will recreate itself forever.

How the Cycle Begins

Many cycles in HIV care begin the same way. A community is framed as a problem before it is ever seen as a community. A neighborhood becomes a cluster. A social network becomes a risk environment. A person becomes a case.

The first step in the cycle is categorization. Public health institutions decide who counts and who does not. The categories are built long before any person is counted inside them. By the time people are placed into the system, the narrative around them already exists. And the narrative is usually deficit based. It is grounded in fear, assumptions, and the need for a clean storyline.

This is how stigma begins to shape the path forward. The initial framing determines what questions will be asked and which ones will be ignored. The framing determines what is seen as a problem worth funding and what is quietly placed in the background because it challenges comfort, legitimacy, or existing authority.

That framing is not random. It is shaped by the same systems that have always divided the worthy from the unworthy. It mirrors the puritanical logic described in the second blog — a logic that needs clear lines between good and bad, compliant and noncompliant, responsible and irresponsible, eligible and ineligible. Public health merely gives that old logic new language.

Where the Cycle Tightens

Once the framing is set, the cycle moves into its next stages. These are the parts people experience in clinics, nonprofits, and research settings every day.

1. Blame Wrapped in Neutrality

Providers say, “We just want to help you reduce risk.”Funders say, “We are focused on evidence-based interventions.”Researchers say, “We follow the data.”

None of these statements are false, but none are neutral. They allow institutions to treat structural problems as individual failures. They let systems avoid accountability by placing the burden on the person already carrying inequality.

2. Surveillance Framed as Care

Programs collect mountains of personal information in the name of prevention, often without offering meaningful support in return.

Partner services databases track who someone has dated, slept with, lived with, or shared injection equipment with. In many states, if a person tests positive, their name and viral load are automatically reported to the health department. Outreach can feel more like policing than support.

In some jurisdictions, health workers repeatedly contact people whose viral loads rise, even sending letters to their homes. People are monitored through appointment logs, pharmacy refill records, compliance checklists, and case management databases that follow them across agencies.

People are tracked in ways unimaginable for wealthier, whiter, more resourced communities. A missed lab draw can trigger a welfare check. A late prescription pickup becomes “nonadherence.” In some areas, people have been visited by law enforcement for “wellness checks” when surveillance flags them as “high risk.” Risk becomes a justification for control.

3. Compliance Disguised as Engagement

People are expected to navigate rigid systems that never considered their lives in the first place.

Clinics demand perfect appointment attendance while offering limited hours and unreliable transportation support. Missing an appointment — even due to work, childcare, homelessness, or mental health — can lead to being marked “noncompliant,” and in some clinics, prescriptions are withheld until appointments are rescheduled.

Research protocols assume people can take time off work for caregiving or multiple daytime visits. If someone cannot meet this structure, they are labeled “lost to follow-up,” as if they vanished rather than the system proving it was never accessible.

Doctors can drop patients for “nonadherence,” even when the barrier was the clinic’s inaccessibility. Funding requirements measure how well programs enforce compliance, not how well systems adapt to reality.

These mechanisms create the illusion that the system has done everything it could. When someone falls through the cracks, the system claims the person failed — never naming the fact that the cracks were built into the design.

The Universality of Stigma’s Cycle

This cycle is not unique to HIV. We see it in mental health, substance use, homelessness, disability rights, reproductive justice, and public education.

It starts by defining a community as a problem.It moves into monitoring that community instead of resourcing it.It interprets barriers as personal flaws instead of structural outcomes.It demands compliance without providing safety.It defines success in terms that protect institutions rather than people.

People feel the cycle long before they understand it. A school labels a child “behavioral” instead of asking why they are falling asleep in class. A mental health provider calls a patient “treatment-resistant” instead of acknowledging the clinic’s inaccessibility. A social worker assumes neglect instead of recognizing poverty.

These patterns are not accidents. They are structural habits, passed down and rarely questioned. It is not just about attitudes. It is about the way systems are built to reproduce the same outcomes over and over again.

When the Cycle Becomes Policy

HIV offers one of the clearest examples of stigma becoming formalized in policy.

Criminalization laws punish people living with HIV for actions that pose no risk. Some states criminalize consensual sex without disclosure, even with an undetectable viral load. These laws reflect fear, not science.

Mandatory partner notification forces people into unsafe systems. Undocumented individuals fear immigration consequences. Survivors of violence face increased risk when disclosure is forced. Yet the system treats disclosure as administrative.

Housing policies tied to sobriety or abstinence ignore the realities of trauma and survival. People are denied services because they do not match the system’s preferred narrative of “readiness.” Requirements like proving 30 days of residence exclude people whose instability is the result of violence or rejection.

Policies framed as protection end up filtering out the very people they claim to serve.

Once these policies exist, institutions hide behind them. “We are required to do it this way” becomes the excuse, even when the requirements are rooted in outdated science or oppressive logic. The cycle persists because it has become bureaucratic fact.

How Communities Are Erased Inside the Cycle

One of the most damaging parts of this pattern is the way it erases marginalized communities from existence inside HIV care. Not through intention, but through practice. When systems are built around people who have stable housing, access to transportation, consistent income, predictable schedules, and institutional trust, everyone who does not have those things becomes invisible.

The system does not ask why trans women avoid clinics. It just counts them as “lost to follow up.”It does not ask why Black queer men may distrust public health messaging. It just notes “low uptake.”It does not ask why undocumented people decline services. It just records “ineligible.”

Entire communities are erased through paperwork. Their absence becomes data, and the data becomes justification for the same decisions that erased them in the first place.

This is the heart of the cycle: the system creates the conditions for exclusion, then cites the results of that exclusion as proof that the system was right.

Naming What We Are Not Supposed to Name

Cycles break only when the root is named. Institutions rarely name roots because they reveal responsibility.

People with power insist things are “complicated,” “being examined,” or “in progress.” They gesture toward the future while ignoring present harm.

Organizations claim community-centered decision-making while cutting the very programs that serve community. They promise new initiatives while gutting ones led by the most impacted. They speak of long-term strategy while refusing to acknowledge immediate consequences.

Avoidance keeps the cycle intact.

Breaking the cycle requires telling the truth about how systems protect themselves at the expense of the people they exist to serve.

Building Something That Cannot Repeat the Past

In the final installment, I will turn to what it means to build a model that does not recreate this cycle ever again. Not a rebranding of existing systems. Not a promise of “culturally competent” services that still protect the same hierarchy. But something fundamentally different.

I will focus on the structures, practices, and values that could replace the old logic entirely. I will examine what it means to design HIV care, research, and policy in ways that do not depend on stigma, surveillance, or compliance as their backbone. And I will explore what it looks like when communities do not just have a seat at the table, but build the table, define the priorities, and shape the field on their own terms.

We cannot break a cycle by improving it. We break it by refusing to participate in it at all.

The next blog will name that path clearly.

References

UNAIDS — Ending HIV Stigma and Discriminationhttps://www.unaids.org/en/topic/stigma

Centers for Disease Control and Prevention (CDC): HIV Surveillancehttps://www.cdc.gov/hiv/library/reports/hiv-surveillance.html

The Center for HIV Law & Policy — Tracking HIV Criminalization in the U.S.https://www.hivlawandpolicy.org

CDC: Partner Serviceshttps://www.cdc.gov/hiv/programresources/ps/

HIV Justice Network — HIV Criminalization in the United Stateshttps://www.hivjustice.net

Housing Opportunities for Persons With AIDS (HOPWA)https://www.hud.gov/program_offices/comm_planning/hopwa

National Low Income Housing Coalitionhttps://nlihc.org