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.
Bipartisan Hepatitis C Elimination Plan Presents Critical Lame Duck Opportunity
The presidential election results have created an urgent six-week window for advancing the National Hepatitis C (HCV) Elimination plan. With significant changes to federal healthcare policy likely under the incoming administration, Senators Bill Cassidy (R-LA) and Chris Van Hollen (D-MD) see the lame duck session as a critical opportunity to secure this public health initiative. The legislation's prospects benefit from Senator Cassidy's likely chairmanship of the Senate Health, Education, Labor and Pensions (HELP) Committee in the next Congress, providing potential continuity for implementation oversight despite the broader administrative transition.
The Congressional Budget Office's analysis provides compelling economic justification for swift action. Current estimates indicate between 2.5 and 3.0 million people in the United States are living with HCV, yet only one in three people diagnosed receive treatment within 12 months. This treatment gap resulted in over 14,000 deaths from HCV-related complications in 2020 alone - deaths that could have been prevented with existing curative treatments that demonstrate 95% effectiveness.
The scope of this crisis demands federal intervention. State-level efforts, while demonstrating potential, have proven insufficient for achieving elimination goals. The Cassidy-Van Hollen legislation addresses fundamental barriers beyond medication costs, including provider education, treatment infrastructure, and implementation support. These comprehensive elements, combined with projected long-term savings, position this bill as a rare opportunity for bipartisan achievement in public health policy during a period of political transition.
Economic Analysis Reveals Complex Implementation Challenges
The Congressional Budget Office's June 2024 analysis examines two treatment expansion scenarios among Medicaid enrollees, revealing both significant savings potential and implementation complexities. Under a conservative 10% peak increase in treatment rates, averted healthcare spending would reach $0.7 billion over ten years against $0.5 billion in testing and treatment costs. A more aggressive 100% peak increase could generate $7 billion in averted costs against $4 billion in treatment expenses.
These projections, however, exclude critical implementation costs that could significantly impact program effectiveness. The CBO notes successful expansion requires substantial investment in outreach activities, provider education, and infrastructure development. As treatment rates increase, identifying and engaging people who need treatment becomes progressively more complex and costly - a challenge demonstrated by state-level experiments with subscription models.
Louisiana's program illustrates both the potential and limitations of cost-focused approaches. While reducing projected costs from $760 million to $35 million annually and treating over 1,600 people since 2019, treatment rates have steadily declined. Washington state's experience proves more concerning - treatment rates fell below pre-subscription levels, dropping from 6,649 prescriptions in 2017 to 2,409 in 2021.
The CBO's analysis particularly focuses on Medicaid enrollees, noting this population includes many people at elevated risk for HCV, including people who inject drugs and people who have been involved with the criminal justice system. This targeted approach allows for more precise cost projections while addressing a key demographic in HCV elimination efforts. Notably, the standard 10-year budget window may undervalue long-term benefits, as many health complications from untreated HCV develop over decades.
State experiences reveal important lessons for federal policy design. Washington's planned initiatives - including emergency room screening programs, mobile testing units, and expanded clinic access - remained largely unrealized due to budget constraints. Louisiana's model, despite demonstrating viable cost-control mechanisms, approaches expiration without renewal funding. These outcomes emphasize the need for sustained federal support rather than relying on state-level innovation.
Carceral Settings Reveal Critical Implementation Lessons
Treatment access in prisons provides critical insight into healthcare system readiness for HCV elimination. Despite controlled environments ideal for treatment delivery, systematic failures in carceral settings expose fundamental weaknesses in current approaches. Between 2014-2019, 1,013 people died from HCV-related complications while incarcerated, with the prison death rate reaching 10.0 per 100,000 people by 2019 - more than double the 4.3 per 100,000 rate in the general population.
State-level data reveals how policy choices, rather than medical constraints, drive treatment disparities. Florida reported 7,000 untreated cases in 2021 despite court-ordered treatment expansion. Texas provided treatment to only half of its known HCV-positive population of 11,301-15,563 people. Oklahoma's statistics prove particularly alarming - its prison death rate of 71.9 per 100,000 exceeds its general population rate by more than five times, despite the corrections department requesting nearly $100 million for increased treatment.
Recent investigations have catalyzed improvements in several states' treatment protocols. The FDA's 2024 approval of point-of-care testing technology enables rapid diagnosis and treatment initiation in carceral settings. However, implementation remains inconsistent across state systems, with many maintaining restrictive eligibility criteria that delay treatment until people develop severe liver damage. Texas, for example, still lacks universal screening protocols at intake facilities, leaving countless cases unidentified and untreated.
Legal challenges have prompted some progress. Florida, under court order, treated over 3,000 people between 2018 and 2021. Texas agreed to treat at least 1,200 people annually following a 2020 settlement. However, these court-mandated improvements highlight both the potential for rapid treatment expansion and the need for comprehensive federal policy to ensure consistent care delivery.
These systemic failures in controlled environments underscore broader implementation challenges. If consistent HCV treatment proves difficult in settings with stable populations and established healthcare infrastructure, addressing treatment gaps in the general population requires even more robust support systems and sustained funding commitments.
Implementation Barriers Demand Federal Solutions
Provider engagement represents a critical barrier beyond cost reduction. Despite HCV treatment's relative simplicity compared to managing diabetes, primary care providers often hesitate to initiate treatment. A recent study found that while 94% of specialists prescribe HCV treatment, only 23% of primary care providers do so. Insurance authorization processes exacerbate this reluctance - a single prior authorization request consumes 35 minutes of staff time responding to questions often designed to find denial justifications rather than facilitate treatment.
Geographic barriers particularly impact rural communities. In Louisiana, people in certain parishes travel 50-70 miles to reach HCV treatment providers. This distance barrier disproportionately affects people receiving Medicaid who often lack reliable transportation. Rural provider shortages compound these access issues - many rural clinics lack staff trained in HCV care, while others face chronic understaffing that limits capacity for managing complex prior authorization requirements.
Louisiana's experience highlights how workforce challenges undermine treatment expansion even when medication costs are controlled. The state's STI, HIV, and Hepatitis Program struggles with chronic understaffing due to uncompetitive wages and complex contracting arrangements. These staffing limitations directly impact program effectiveness - outreach activities decrease, patient engagement suffers, and treatment initiation rates decline despite medication availability.
The proposed federal legislation addresses these systemic barriers through targeted investments in:
Provider education and ongoing support programs
Infrastructure development for treatment expansion
Resources for patient engagement and retention
Support for innovative delivery models including mobile clinics
Integration with existing healthcare systems and substance use treatment programs
Workforce development and training initiatives
Early state experiences demonstrate that successful implementation requires simultaneous investment across these domains. Washington's inability to realize planned initiatives - including emergency room screening programs and mobile testing units - despite cost controls highlights the need for comprehensive federal support beyond medication access.
Political Window Demands Swift Advocacy Action
The lame duck session presents a rare confluence of political factors favoring HCV elimination policy. Senator Cassidy's likely ascension to HELP Committee chair in the next Congress, combined with his partnership with Senator Van Hollen, bridges current and future implementation efforts. The CBO's projection that a national elimination program could prevent 24,000 deaths and save $18.1 billion in healthcare costs provides compelling economic justification for swift action.
Recent developments strengthen the case for immediate passage. The FDA's approval of point-of-care testing technology enables rapid diagnosis and treatment initiation, particularly in high-impact settings. Louisiana's subscription model expiration creates urgency for federal intervention to sustain successful state initiatives. These factors, combined with potential changes to federal healthcare policy under the incoming administration, make the current legislative window critical for securing comprehensive HCV elimination policy.
The evidence from state experiences demonstrates both the promise and limitations of isolated initiatives. Federal legislation can build on these lessons, providing comprehensive support for implementation while ensuring sustained political commitment through bipartisan leadership. With only weeks remaining in the current congressional session, advocates must emphasize the unique opportunity this moment presents for achieving significant public health progress.
Conclusion
The opportunity for action is narrow, but the potential impact is immense. The bipartisan momentum behind the National Hepatitis C Elimination plan is a chance to advance public health policy at a time when it is desperately needed. The barriers are clear: implementation challenges, provider hesitancy, and geographic and economic obstacles. Yet the solutions are within reach, and the economic and human benefits are undeniable. Federal intervention can address the systemic gaps that state efforts alone cannot fill, providing comprehensive support to save lives and reduce costs.
However, uncertainty looms over the future of public health funding and support under a second Trump Administration, which looks to bring significant changes to federal healthcare priorities. This adds urgency to the current push for bipartisan action.
As advocates, the time to push is now. The lame duck session represents a rapidly closing window to secure funding, address legislative gaps, and ensure continuity into the next Congress. Swift passage of this legislation would not only demonstrate the power of bipartisan collaboration but also offer a meaningful legacy—one that saves thousands of lives and sets a precedent for effective, equitable public health initiatives in the United States. We cannot afford to let this window close without taking action.