The HIV Care System Is Breaking Before Congress Even Cuts It

In October 2025, the Emergency HIV Clinical Response Task Force surveyed 526 HIV clinicians across the United States. Seventy percent reported service disruptions affecting their patients, with the Midwest and South hit hardest at 77% and 71%. Gender-affirming care topped the list of disrupted services at 33%, followed by housing support at 26% and PrEP or PEP access at 25%. Transgender people and immigrants bore the heaviest impact, with 41% and 38% of clinicians reporting these populations were most affected.

These numbers tell an important story, but not the one many headlines suggest. The disruptions in this survey are not the result of Congressional budget cuts to HIV programs. No legislation has eliminated Ryan White HIV/AIDS Program funding or CDC prevention dollars. Instead, they stem from administrative actions, grant recissions, and bureaucratic obstruction that destabilized HIV services months before Congress debated any cuts at all.

That distinction matters. It reveals how vulnerable the HIV care infrastructure has become, and how much worse things could get if proposed eliminations of HIV programs and broader healthcare funding cuts move forward.

The Administrative Stranglehold

The current disruptions trace directly to Office of Management and Budget Director Russell Vought’s systematic manipulation of the federal budget process. Before joining the Trump administration, Vought outlined these tactics in Project 2025, describing how “apportioned funding” could “ensure consistency with the President’s agenda.” He has executed this strategy with surgical precision.

Rather than releasing appropriated funds to agencies like the Centers for Disease Control and Prevention (CDC) in standard apportionments, Vought shifted to monthly releases requiring Department of Government Efficiency (DOGE) review for every grant award. By August 2025, the CDC’s center for HIV and tuberculosis prevention had spent $167 million less than historical averages, the Ryan White Program underspent by $105 million, and mental health funds at the Substance Abuse and Mental Health Services Administration lagged by more than $860 million.

The money exists. Congress appropriated it. Administrative roadblocks are what prevent it from reaching clinics, health departments, and community organizations.

The human cost is visible in provider reports. When funding delays hit in July 2025, 81 HIV organizations wrote to HHS Secretary Robert F. Kennedy Jr. warning that “with every day of delayed FY2025 funding release, the delivery of essential HIV services is compromised.” Clinics laid off case managers, reduced clinician hours, closed sites, and scaled back hotlines. The funds eventually arrived about a month later, but the damage—to staff capacity, patient trust, and continuity of care—was done.

At St. John AIDS outreach ministry in New Orleans, program director Tamachia Davenport faced a choice: cut staff or cut supplies when CDC funds did not arrive on time. To keep staff from fleeing to more stable jobs, she stopped buying condoms the organization distributes to prevent sexually transmitted infections—despite Louisiana’s already high rates of HIV, chlamydia, and gonorrhea, and the fact that condoms cost far less than treating any of them.

One CDC official summarized the view from inside: “Everyone’s inbox is full of letters from grant recipients asking, ‘How do we proceed?’ We just say, ‘Please wait.’”

Robert Gordon, a public policy specialist at Georgetown University and former assistant finance secretary at HHS, described the strategy plainly: “This is a sophisticated strategy to cause money to lapse and then say, ‘If they can’t spend it, they don’t need it.’”

The Unlegislated Threat

While administrative actions create the current disruptions, proposed legislation in Congress represents a qualitatively different threat.

In September 2025, the House Appropriations Committee released its FY2026 funding bill eliminating all CDC HIV prevention funding—approximately $1 billion—and cutting the Ryan White HIV/AIDS Program by $525 million, or 20%.

The bill does not merely trim budgets. It eliminates program components entirely. Ryan White Part F, including AIDS Education and Training Centers, the Dental Reimbursement Program, and the Minority AIDS Initiative, would disappear. The $220 million for the Ending the HIV Epidemic initiative would be eliminated. Direct grants to more than 400 HIV clinics providing care and treatment through Ryan White Parts C and D would end.

Carl Schmid, executive director of the HIV+Hepatitis Policy Institute, summed up the stakes: “This is not a bill for making America healthy again, but a disastrous bill that will reignite HIV in the United States.”

The Senate tells a different story. In July 2025, the Senate Appropriations Committee advanced a bipartisan bill that maintains flat funding for all parts of the Ryan White Program ($2.57 billion), level funding at $220 million for Ending the HIV Epidemic, and flat funding for CDC HIV prevention. The contrast could not be clearer.

Researchers at Johns Hopkins Medicine modeled what would happen if federal funding for Ryan White ended. Their study in the Annals of Internal Medicine projects 75,436 additional HIV infections through 2030, a 49% increase. As senior author, Dr. Todd Fojo noted, effective treatment is the most powerful form of HIV prevention.

No final FY2026 budget has been enacted. The government is operating under a continuing resolution, and the gap between House and Senate proposals is unresolved. But the threat is not hypothetical, and the clinician survey’s forward-looking data reflects it: 72% anticipate moderate or significant service disruptions in the next 6–12 months, rising to 77% for the following 12–18 months.

The Broader Ecosystem Under Siege

The clinician survey captures disruptions to direct HIV services, but not the compounding pressures from Medicaid restructuring that threaten both coverage for people living with HIV and the financial stability of AIDS service organizations.

The One Big Beautiful Bill Act, signed July 4, 2025, reduces Medicaid expansion eligibility from 138% to 100% of the federal poverty level, affecting an estimated 200,000 people with HIV. This is not a marginal tweak: 40% of non-elderly adults with HIV rely on Medicaid, nearly three times the rate of the general population. Starting in 2027, adults ages 19–64, captured under the Affordable Care Act’s Medicaid expansion, must complete 80 hours per month of approved activities to maintain coverage, and semi-annual eligibility redeterminations will replace annual reviews, injecting churn into programs where uninterrupted access to antiretroviral therapy is a clinical requirement, not a luxury.

Program eligibility recertification as an administrative burden on patients and otherwise a deterrent to staying enrolled in a program is something Ryan White clients are exceedingly familiar with. Recall, in 2021, under a Policy Clarification Notice (PCN 21-02), historical 6-month recertification requirements were relaxed in order to facilitate keeping eligible clients in care and not losing patients to care because of paperwork burdens. Medicaid work requirements as described in HR1 are the exact opposite of this best practice.

Taken under another lens, many AIDS service organizations converted to Federally Qualified Health Center (FQHC) status after the Affordable Care Act to serve newly insured patients and stabilize revenue. Medicaid comprises 43% of FQHC revenue. The OBBBA cuts into this income through provider tax caps that ratchet down over time and by capping state-directed payments at 100% of Medicare rates in expansion states. At the same time, the Congressional Budget Office projects 7.8 million people will lose Medicaid coverage overall. Enhanced ACA premium tax credits expire at the end of 2025, and so far Congress has not extended them.

As Davenport of St. John AIDS outreach told KFF Health News, “A lot of us are having to rob Peter to pay Paul.” But what happens when Peter gets defunded? Maybe the “Good Christians” in the halls of Congress can tell us.

Another angle of “robbing Peter”, is state expansion of 340B by way of allowing Medicaid providers to opt for any given claim under the 340B program, rather than forcing the claim through Medicaid. In these scenarios, the provider benefits the most from 340B discounts while robbing the state’s Medicaid program of possible Medicaid Drug rebates because no single claim may receive both. One report tied this Medicaid divestment to the tune of $1.2 billion annually. A novel consideration might be stabilization of Medicaid programs and payments by way of disallowing the option of 340B claims and requiring those claims be passed through a state Medicaid program. Maximizing Medicaid’s re-investment opportunity stabilizes both state budgets and the payment ecosystem for qualified healthcare entities.

Ground Truth: What’s Happening Now

Local decisions layered on top of federal obstruction are already shutting people out of care. Institutional brain trust and community trust in those same institutions is easy to lose and hard to recover.

In Mecklenburg County, North Carolina, the public health department laid off six workers, including half its disease investigators, when HIV prevention and surveillance grants expired at the end of May with no information about future funding. The grants were restored a month later, but only half the positions were refilled. “So now we’re behind, and cases are still being reported every day that have to be investigated,” said director Raynard Washington.

In Dallas County, Texas, public health director Philip Huang waits for nearly 30% of the promised award for emergency preparedness with no timeline or clarity, making basic staffing decisions feel like a gamble.

Breanne Armbrust, executive director of Richmond’s Neighborhood Resource Center, summed up the cumulative burden on patients: “They’re already sick or in need of care and asking them to do one more thing when their acuity levels might be high is too much, and it’s unreasonable.”

The Warning We Cannot Ignore

The clinician survey documents disruptions caused by administrative obstruction at a time when HIV programs still technically have appropriated funding. It is a snapshot of a system that is already unstable.

If the House FY2026 proposal eliminating CDC prevention funding and cutting Ryan White by $525 million becomes law, these disruptions will not simply “increase,” they could scale into system failure. Each new HIV infection carries an estimated at least $501,000 in lifetime healthcare costs. The Ryan White Program in 2023 achieved a 90.6% viral suppression rate among 576,000 clients. These programs work. Dismantling them would reverse decades of progress in a matter of years.

The workforce crisis compounds the threat. The United States needs 1,500 additional HIV specialists to reach 90-90-90 benchmarks. The South already has only 8 providers per 1,000 people with HIV, compared with 11 nationally. Counties that have reached at least one 90-90-90 target have 13 providers per 1,000. Eliminating AIDS Education and Training Centers, as the House bill proposes, would deepen that shortage just as demand for services intensifies.

None of this is theoretical. Administrative sabotage is already cutting off care people depend on to stay healthy, alive, and connected to treatment. Layer a legislative funding strike on top of a system this fragile, and the outcome is entirely predictable: preventable infections, preventable deaths, and preventable suffering concentrated among people already pushed to the margins.

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:

1. 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.

2. HHS must rapidly rehire technical expertise with the institutional knowledge needed to maintain these complex systems before contracts expire and systems fail.

3. 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.

4. 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.