Collateral Damage: How Shutdown Politics Abandons Survivors at the Margins
October is Domestic Violence Awareness Month - but in 2025, awareness is no longer enough. Across the United States, people living with HIV (PLWH), hepatitis C (HCV), and substance-use disorders (SUD) are facing a convergence of crises where intimate partner violence (IPV) amplifies every barrier to care. At the same time, the U.S. Department of Justice’s grant programs - lifelines that help survivors achieve viral suppression, complete HCV treatment, and sustain recovery - are being systematically dismantled after three decades of bipartisan progress.
The numbers tell a story every HIV provider knows. One in four people living with HIV (26.3%) has experienced intimate partner violence. When abusive partners prevent medication adherence, sabotage appointments, or create chaos that interrupts treatment, survivors show 36 percent lower odds of achieving viral suppression than those without IPV histories. Women carry a disproportionate burden, but men with IPV history face nearly triple the HIV prevalence of men without, and transgender people report lifetime IPV rates between 31 and 50 percent while experiencing 66 times higher HIV prevalence than the general population.
For HCV, the overlap is even tighter. Sixty-eight percent of women who inject drugs have HCV, and 40 to 60 percent of domestic-violence cases involve substance use. These aren’t parallel epidemics - they’re feedback loops. Violence undermines treatment; HIV or HCV status becomes a weapon of control; trauma drives relapse. Each condition magnifies the others, and when federal support for survivor-centered programs collapses, the entire structure of prevention and recovery begins to unravel.
The Bidirectional Syndemic
The relationship between intimate partner violence and HIV is both brutally direct and insidiously complex. Women in abusive relationships face a 48% higher likelihood of HIV infection than those in non-abusive relationships. Abusive partners often sabotage safer-sex practices - research shows that condom negotiation attempts frequently trigger coercion or violence. Among people living with HIV, 24% of women experience abuse after disclosing their status, and those reporting recent gender-based violence are significantly less consistent in condom use. Gay men report 26% lifetime IPV prevalence, underscoring that control operates across gender and orientation.
The link to hepatitis C exposes another layer of risk. In relationships where both partners inject drugs, power imbalances determine who controls access, dosing, and the act of injection itself. Partners with more control may withhold drugs to induce withdrawal or insist on injecting the other, reinforcing dependence and exposure. Violence-related bleeding raises the odds of HCV infection 5.5-fold, what researchers call “a previously unrecognized mechanism for HCV transmission.” Among women who inject drugs, 60% report receptive syringe sharing, a behavior shaped by depression and low self-esteem resulting from abuse.
Trauma also drives substance use itself. Eighty percent of women in drug treatment report lifetime sexual or physical assault. Reductions in PTSD severity correspond to four-fold decreases in substance use, while the reverse is rarely true - reinforcing the self-medication model in which survivors use substances to cope with violence.
This syndemic runs both ways. HIV, HCV, and substance-use disorders not only result from domestic violence - they also increase vulnerability to it. Nearly one-third of people living with HIV experience violence following serodisclosure, including coercion, control, and financial or sexual exploitation. Nearly one-third of survivors report that partners deliberately withheld essential medication, from HIV antiretrovirals to HCV or opioid-use-disorder treatments, weaponizing care itself as a means of control.
When Laws Become Weapons
HIV criminalization laws in 32 states create a deadly double bind for domestic violence survivors. Enacted largely between 1986 and 2000 - before modern antiretroviral therapy and long before the U=U consensus - these statutes criminalize potential exposure regardless of actual transmission, condom use, or viral suppression.
Twenty-four states require disclosure of HIV status before any sexual activity. Penalties range from 3 to 10 years in prison, extending to 25 or more in some states. At least five mandate sex-offender registration for HIV-related convictions.
The control dynamic is devastatingly simple. Disclosure can trigger violence - studies show 18% to 80% of women living with HIV experience violence after disclosing their status - yet non-disclosure remains a felony. Abusers exploit this legal trap, threatening to report partners to police or weaponizing the risk of decades-long sentences and sex offender registration as blackmail.
Research from Canada illustrates the toll: one-fifth of women living with HIV said criminalization laws increased violence in their relationships. The perverse outcomes are clear. In one documented case, a woman reported her partner for abuse, only to be charged herself after he alleged non-disclosure during a single encounter, despite a four-year relationship in which she had disclosed her status.
The 2025 Federal Funding Crisis
Hours after the government shut down on October 1, 2025, the Trump Administration furloughed staff in the Department of Justice’s grant-making offices, halting support for organizations that serve victims of domestic violence and other violent crimes. Officials cited the shutdown as the cause, but former staffers told Politico it didn’t have to be this way - these programs had operated during past shutdowns with existing funds.
“Their own contingency plan says that they have funds. So it’s a choice to say, ‘We want this to hurt,’” said Marnie Shiels, who worked 24 years in the Office on Violence Against Women (OVW). “I can’t know for sure what they’re thinking, but I very much fear that it is about a political motivation of wanting to get rid of this issue, get rid of this office, get rid of the staff.”
The furloughs followed a year of escalating disruptions. In February, OVW abruptly removed all eight fiscal-year 2025 funding notices, including a $40 million transitional-housing program that had served hundreds of survivors for nearly two decades. In April, the Department of Justice terminated more than 360 grants, cutting roughly $500 million in remaining funds and affecting hundreds of sub-awards for violence prevention, victim services, mental-health treatment, and reentry programs.
When new opportunities appeared in May, they came with expanded “out-of-scope” rules that barred activities “framing domestic violence or sexual assault as systemic social-justice issues.” The language aligned with a January 2025 executive order, “Defending Women from Gender Ideology Extremism,” and a subsequent directive ordering agencies to remove “gender ideology” from contracts, websites, and correspondence. PEN America later documented more than 350 banned words, including gender, women, trans, LGBTQ+, diversity, and disability - effectively erasing the terminology needed to describe many of the populations these programs serve.
The effects reach beyond domestic-violence services. NIH canceled dozens of HIV-related research grants in March; five CDC HIV-prevention branches were dissolved; and hepatitis funding was cut by $77 million. Proposed reductions to the Ryan White HIV/AIDS Program total $239 million.
For organizations serving survivors living with HIV, hepatitis C, or substance-use disorders, these converging cuts are existential - removing both their funding streams and, in some cases, their ability to even describe who they serve. Shiels noted that leadership had “said that they want federal employees to feel ‘trauma,’” and recalled the president’s remark that “a little fight with the wife shouldn’t be a crime.” The contrast, she said, “shows they don’t understand or care about these issues.”
The Office on Violence Against Women - created in 1995 and made independent in 2004 - has awarded more than $4.7 billion in grants since its inception, including $684 million across 880 awards in FY 2024. That bipartisan infrastructure recognized what decades of data confirm: 55 percent of women living with HIV have experienced intimate-partner violence, a link directly associated with lower care engagement, higher viral loads, and worse health outcomes.
Now, the systems built to protect those lives hang by a thread.
What We Must Do Now
The convergence of domestic violence, HIV, hepatitis C, and substance use disorders is not theoretical - it’s the reality providers see every day. Survivors’ viral loads rebound when housing instability forces them back to abusive partners. Hepatitis C treatment stalls when the only culturally competent program loses its grant. Trauma-informed care disappears, and relapse follows. The nation’s Ending the HIV Epidemic and hepatitis C elimination goals cannot succeed while survivors are forced to choose between safety and survival.
Rebuilding that safety net demands more than temporary fixes. The Department of Justice must reopen its grant-making offices - shutdown or not - and restore continuity for organizations on the front lines. Congress must fully fund these programs and eliminate restrictions that prevent them from even naming the people they serve. States must modernize or repeal HIV criminalization laws that trap survivors in violent relationships under the guise of public health.
A syndemic is not fate; it is a policy choice repeated, ignored, and justified until it becomes another fading bruise on a battered cheek. The systems we built to keep people alive are being dismantled in plain sight - not through neglect, but intent. And when government decides that survival itself is partisan, silence becomes complicity.
System Failure: Inside the Collapse of HIV Data Protections
The privacy frameworks that protect people living with HIV—built over decades through advocacy, legislation, and the lived consequences of stigma and surveillance—are now on the brink of collapse. Recent reporting from WIRED reveals that "much of the IT and cybersecurity infrastructure underpinning the nation’s health system is in danger of a possible collapse" following deep staffing cuts at the U.S. Department of Health and Human Services (HHS). Agency insiders warn that "within the next couple of weeks, everything regarding IT and cyber at the department will start to reach a point of no return operationally."
These reductions—orchestrated under the banner of "efficiency"—have eliminated the technical expertise necessary to maintain the very systems designed to protect patient information while enabling effective public health response. What took decades of careful negotiation to build could unravel in weeks.
A History of Mistrust and What It Built
In response to early AIDS panic and political scapegoating, HIV reporting systems were designed to protect privacy while still enabling public health surveillance. States initially resisted name-based reporting, opting instead for coded identifiers. These systems directly resulted from community resistance to the idea that a centralized government entity would hold a list of PLWH. By the late 1990s, the Centers for Disease Control and Prevention (CDC) and Health Resources and Services Administration (HRSA) had settled into a delicate dance: collect enough data to direct resources without breaking trust with the communities most impacted.
The Ryan White HIV/AIDS Program (RWHAP), created in 1990, is a reflection of this balance. Providers are required to report client-level data annually through the Ryan White Services Report (RSR), but it must be de-identified. Each grantee—whether a city, state, clinic, or community-based organization—must report separately, even if they serve the same client. This redundancy is intentional. It's how we avoid co-mingling funds and how we ensure that data is not aggregated in a way that risks patient re-identification. It’s messy, yes. But it’s designed to protect people, not just count them.
Why It’s So Complicated
At a structural level, RWHAP is segregated by design. Part A grantees are typically cities, Part B is for states, Part C goes to clinics, and Part D supports programs for women, infants, children, and youth. Each grantee and subgrantee reports separately. A person receiving services from a city-funded housing program and a clinic-funded medical program will appear in two different reports. They’ll be encrypted, anonymized, and counted twice—because each program needs its own audit trail. This is not a flaw. It’s a firewall.
It’s also one of the biggest complaints from providers. Clinics and case managers spend untold hours cleaning and submitting the same data to multiple entities for different grants every year. State agencies complain about the burden. But buried underneath the frustration is the reality: these walls are what keep private information from being aggregated, shared, and potentially exposed (or worse, used to target).
Molecular Surveillance and the Reemergence of Privacy Concerns
Parallel to the RSR reporting, the CDC continues to manage HIV surveillance through diagnostic reports, lab data, and increasingly, molecular surveillance—using genomic data from viral samples to track clusters and potential outbreaks. These systems operate independently from care-based reporting systems like the RSR. They’re not supposed to overlap. That’s on purpose.
Molecular surveillance is a powerful tool. It can detect transmission networks, identify gaps in care, and help allocate resources. But it also raises serious privacy concerns. People have no ability to opt out of having their viral sequence data analyzed. Community advocates have raised alarms about how this data could be misused—especially in states with HIV criminalization laws or where public health trust is already low.
When properly separated from care systems, surveillance data can inform public health strategy without endangering patient privacy. But the more these systems are tampered with, neglected, or mismanaged, the greater the risk of privacy breaches and data misuse.
The DOGE Playbook: Gutting Public Health from Within
None of this works without infrastructure. And right now, that infrastructure is being hollowed out.
On April 1, the Department of Health and Human Services (HHS) laid off roughly 10,000 employees—about 25% of its workforce. That includes entire IT teams, cybersecurity experts, and staff responsible for maintaining the systems that house Ryan White and surveillance data. As WIRED reported, these cuts have left HHS systems teetering on the edge of collapse.
The layoffs were orchestrated by the Department of Government Efficiency (DOGE), a Musk-backed initiative with a mandate to slash spending and "modernize" systems. In reality, DOGE operatives have cut critical personnel and attempted to rebuild complex legacy systems—like Social Security's COBOL codebase—without the necessary expertise. As NPR reported, DOGE staff have also sought sweeping access to sensitive federal data, raising serious concerns about the security and ethical use of health information.
A retired Social Security Administration (SSA) official warned that in such a chaotic environment, "others could take pictures of the data, transfer it… and even feed it into AI programs." Given Musk's development of "Grok," concerns have been raised that government health data might be used to "supercharge" his AI without appropriate consent or oversight.
The value of this data—especially when aggregated across systems like HHS, SSA, Veterans Affairs, and the Internal Revenue Service—is enormous. On the black market, a single comprehensive medical record can command up to $1,000 depending on its depth and linkages to other data sets. For commercial AI training, the value is even greater—not in resale, but in the predictive and market power that comes from large, high-quality datasets. If private companies were paying for this kind of dataset, it would cost billions. Musk may be getting it for free—with no consent, no oversight, and no consequences.
Meanwhile, at USAID, funding portals were shut off. Grantees couldn’t access or draw down funds. Even after systems came back online, no one was there to process payments. The same scenario is now playing out at HHS. Grantees have reported delays, missed communications, and uncertainty about reporting requirements—because the people who used to run the systems have been fired.
What's at Stake: Beyond Data Points
The crisis we're witnessing isn't merely technical—it threatens the foundation of HIV services in America. When data systems fail, grants cannot be properly administered. When grants are disrupted, services are compromised. And when privacy protections collapse, people living with HIV may avoid care rather than risk unwanted disclosure of their status.
We've been here before. In the early days of the epidemic, mistrust of government systems drove people away from testing and treatment. The privacy frameworks built into today's reporting systems were designed specifically to overcome that mistrust, enabling effective public health response while respecting human dignity.
A Call for Immediate Action
To address this growing crisis, we need action at multiple levels:
Congress must exercise oversight over DOGE's activities by requiring transparent reporting on HHS staffing changes and their operational impacts, and by establishing strict limits on data access and audit trails to ensure administrative accountability.
HHS must rapidly rehire technical expertise with the institutional knowledge needed to maintain these complex systems before contracts expire and systems fail.
Advocacy organizations should demand clear guardrails on any use of healthcare data, particularly regarding AI applications, including explicit prohibitions on repurposing data collected for public health for commercial training without consent or compensation.
HRSA must immediately address the continuity of the RSR and other reporting systems to ensure grant requirements don't become impossible to meet due to system failures.
But let’s be clear: none of this is a call to keep broken systems frozen in time. Public health data infrastructure can—and should—be modernized. There is real opportunity to streamline reporting, reduce administrative burden, and build tools that serve patients more effectively. But modernization must be done carefully, collaboratively, and with privacy at the center—not with a chainsaw in one hand and a Silicon Valley slogan in the other.
The “move fast and break things” ethos may work for social media startups, but it has no place in systems that safeguard the lives and identities of people living with HIV. What we’re witnessing is not innovation—it’s ideological demolition. The goal isn’t better care or stronger systems. It’s control, profit, and a reckless dismantling of public trust.
The myth that federal IT systems are merely bloated bureaucracies in need of disruption ignores their critical role in protecting sensitive information. Our public health data infrastructure has been built layer by layer, through hard-fought battles over privacy, accountability, and service delivery. Dismantling these systems doesn’t represent modernization—it threatens to erase decades of progress in building frameworks that enable effective care while respecting the rights of people living with HIV.
The privacy architectures designed in response to the early AIDS crisis weren’t just policy innovations—they were survival mechanisms for communities under threat. We cannot afford to let them collapse through neglect, arrogance, or privatized pillaging. The stakes—for millions of Americans receiving care through these programs—couldn't be higher.
HIV Advocates Gather in Nashville for Health Fireside Chat
From April 27th through 29th, ADAP Advocacy Association (aaa+) hosted its first Health Fireside Chat of the year. The series was rebranded to encompass a broader focus on public health, changing from the HIV/AIDS Fireside Chat to the Health Fireside Chat. Unlike previous Fireside Chats, Nashville’s event added an “ice breaker” activity, themed in light of the hosting city – a line dancing lesson, as well as a town hall meeting convened in partnership with Positively Aware. The additional half day of activities - including the ice breaker, townhall meeting, and meet and greet - allowed attendees to settle into conversation expediently after having a solid hour of good laughs, encouragement, and bonding. Once down to business, policy discussions focused on Tennessee’s politically-motivated decision to decline HIV prevention funding, reforming the 340B Drug Discount Program to better meet patient needs, and the intersection between U=U (undetectable equals untransmittable) and reforming HIV criminalization laws.
The townhall meeting, which was facilitated by Rick Guasco, Acting Editor-in-Chief of Positively Aware, started with recognition that Nashville was explicitly chosen as a hosting city due to the state of Tennessee’s rejection of federal HIV prevention dollars. While a later discussion was specific to that issue, the town hall dug into underlying (and broader) concerns around systemic discrimination as a driver of today’s HIV epidemic. Digging into how racism, as an example, manifests can be a touchy subject in any group, even among those who generally align. Such a charged set of topics, especially among HIV’s thought-leadership, can and does lead to transformational moments, particularly because creating a space of “internal” advocacy provides a chance for us to experience, and navigate, conflict amongst ourselves. That conflict and navigation also provides us a chance to grow together and to break down silos of interest, work, and thought. And this townhall did exactly that.
The first policy session, “Tension in Tennessee: Is an HIV Access to Care & Treatment Crisis Looming?”, lead by the O’Neill Institute’s Jeff Crowley, invited local advocates to discuss their internal view of Tennessee’s “troubles” with some national advocacy representation. While much of the discussion focused on the details of local communication and national assumptions, some discussion on how the state may implement its newly allocated funding (will the state’s budget continue to fund prevention efforts next year?), much of the conversation that followed was explicitly about how local advocates can communicate and collaborate with national advocacy efforts. What became clear from that conversation is much of the national and state level advocacy we tend to reflect fondly of when speaking on decades past is relatively fragile and not well-coordinated. Planning bodies have diminished to largely being provider groups and some don’t even meet – despite a statutory requirement to do exist. An attendee with capacity building expertise pointed out the need for investment in this space. Many planning bodies have been weakened by atrophy, others have faced a demographic shift (and as a result a change in the barriers and assistance needed in order to appropriately activate affected community). The discussion as a whole highlighted the extreme silos working against a cohesive and collaborative advocacy network necessary to support ending the HIV epidemic.
340B remains an important issue for HIV advocates. As such, “340B Drug Discount Program: The Issues Spurring Discussion, Stakeholder Stances, and Possible Resolutions?“ was the focus of the second policy session. Some of the advocates in attendance knew little about the program, so the discussion provided an excellent educational opportunity on how the discount drug program works. Laser focused on issues of health equity, Kassy Perry of Perry Communications Group lead the group to dig in – and quickly. Advocates less familiar with 340B were readily able to identify the need for reform when assessing reductions in charity care and increases in medical debt. The group readily recognized 340B as a powerful tool toward addressing health disparities, especially economic consequences for patients, and where those consequences can and do negatively impact entire areas of patients’ lives. Attendees from industry partners listened intently as advocates described their concerns and the need for the program to better reflect the intent in which it was established.
Day two concluded with attendees enjoying a meal with one another, and a round of singing “happy birthday” to Brandon M. Macsata, the ADAP Advocacy Association’s CEO, who turned 50. This was truly a moment (many of them really) in which attendees got to buy into my desire to ensure our colleague felt loved and celebrated, since we were all together. All told, it is very likely Brandon heard the song “happy birthday” some two dozen times or more throughout the event (and I sincerely encourage ya’ll to do so again, if you find yourself in a meeting with him during the month of May).
The final policy session, “U=U: Is 'Undetectable Equals Untransmittable' Changing the Landscape for HIV Criminalization Laws?“, focused on the intersection of issues between U=U and reforming HIV Criminalization Laws with the conversation hosted by Mandisa Moore-O’Neal, executive director of the Center for HIV Law and Policy, and Murray Penner, executive director of U=U Plus. Mandisa shared with the group the exceptional nature of HIV criminalization laws, but also how general criminal codes are out of date, furthering the HIV epidemic, and nearly exclusively used against Black and Brown people living with HIV. Mandisa also discussed how these laws can and are leveraged to further domestic violence (and coercive control). Murray then discussed how laws which allow for “affirmative defenses” only help those people living with HIV which can readily access and maintain care. All of which emphasized that the design of these laws assume that because someone is living with HIV, they are necessarily presumed “guilty”. Advocates discussed how to break silos, including the potential to partner in prosecutor and public defender education efforts. Advocates focused on health or with strong relationships with their local health departments, for example, might wish to participate in education efforts alongside legal advocacy organizations or a state Bar.
The Health Fireside Chat series remain an exceptional retreat to advance thought-leadership, deep-dive policy conversations, as well as often-under appreciated advocacy collaboration. The ADAP Advocacy Association plans to host additional Health Fireside Chats later this year in Philadelphia, PA, and New Orleans, LA.