The Coming HIV Care Crisis
The One Big Beautiful Bill Act (OBBBA)'s reduction of Medicaid expansion eligibility from 138% to 100% of the federal poverty level (FPL) creates an unprecedented crisis for HIV care in the United States, threatening to force approximately 200,000 people living with HIV off coverage while simultaneously undermining the Ryan White HIV/AIDS Program's capacity to serve as an adequate safety net, ultimately jeopardizing decades of progress toward ending the HIV epidemic and disproportionately harming communities of color and rural populations who already face significant barriers to care.
A Crisis at the Intersection of Policy and Survival
The One Big Beautiful Bill Act, signed into law on July 4, 2025, represents, according to the National Alliance of State and Territorial AIDS Directors (NASTAD), a moment when "AIDS Drug Assistance Programs (ADAPs) stand at a critical precipice." Let us not mince words: this legislation systematically dismantles the interconnected safety net that has enabled the United States to achieve the highest rates of viral suppression in the history of the epidemic.
The math, like those who passed this legislation, is cruel and unforgiving. With 40% of non-elderly adults living with HIV relying on Medicaid for coverage—nearly three times the rate of the general population—this eligibility reduction targets precisely the demographic most dependent on public health insurance. The Congressional Budget Office (CBO) projects that 7.8 million people will lose Medicaid coverage overall, with advocacy organizations estimating that approximately 200,000 people living with HIV will be among those stripped of coverage.
The timing creates a perfect storm. As NASTAD warns, "enhanced premium tax credits associated with Marketplace plans are set to expire later this year." At the same time, state health departments face "drastic budget cuts and reductions in force because of federal agency cuts." This convergence of federal policy changes threatens to create what NASTAD calls "sharp increases in the number of uninsured people with low incomes," precisely when the safety net programs designed to catch them are facing their own funding constraints.
The Medicaid Foundation: Why This Coverage Matters
The reduction from 138% to 100% of the federal poverty level specifically targets the income bracket where HIV prevalence is highest. Research demonstrates that 42% of Medicaid enrollees with HIV gained coverage through the Affordable Care Act's expansion, with this figure rising to 51% in expansion states. More than a mere statistical abstraction, it represents hundreds of thousands of people living with HIV (PLWH) who gained access to consistent, comprehensive healthcare for the first time.
The financial implications reveal the complexity of HIV care. Average Medicaid spending reaches $24,000 per HIV enrollee compared to $9,000 for non-HIV enrollees, reflecting the intensive medical management required for effective HIV treatment. When coverage disappears, these costs don't vanish—they shift to an already overwhelmed safety net or go unmet entirely, leading to treatment interruptions that increase viral loads and HIV transmission risk.
State-level analyses paint an even grimmer picture. Louisiana and Virginia face 21% spending cuts over the 10-year period, while Southern states that bear 52% of new HIV diagnoses despite comprising only 38% of the population will see disproportionate impacts. The legislation includes five major provisions that collectively cut $896 billion from Medicaid: work requirements, repealing Biden-era eligibility rules, provider tax restrictions, state-directed payment limits, and increased eligibility redeterminations.
The Ryan White Program: Last Resort, Impossible Math
The Ryan White HIV/AIDS Program operates on a fundamentally different model than Medicaid—one that makes absorbing massive coverage losses mathematically impossible. With $2.6 billion in discretionary funding requiring annual Congressional appropriations, the program lacks Medicaid's entitlement structure that automatically expands to meet growing needs.
The program's current client base reveals the scale of the challenge. Ryan White already serves over 576,000 clients annually, representing more than half of all diagnosed HIV cases. Critically, 39% of Ryan White clients have Medicaid as their primary payer, meaning they use Ryan White for wraparound services Medicaid doesn't cover. When these people lose Medicaid, Ryan White must suddenly cover their entire care costs—an impossibility given current funding constraints.
NASTAD's analysis warns this would "shift unsustainable burdens to the Ryan White HIV/AIDS Program," potentially forcing jurisdictions to reintroduce AIDS Drug Assistance Program (ADAP) waitlists not seen since the early 2010s. The program's "payer of last resort" status means it legally must serve anyone without other coverage options, creating an unfunded mandate when Medicaid disappears.
Historical evidence demonstrates the program's existing capacity limitations. From 2017-2019, 58.7% of uninsured persons had unmet needs for HIV ancillary care services, yet the program achieved 90.6% viral suppression rates among clients in 2023—a testament to its effectiveness when adequately resourced.
The proposed FY 2026 budget compounds this crisis by cutting Ryan White funding to $2.5 billion while eliminating Part F entirely. Part F includes AIDS Education and Training Centers that reached 56,383 health professionals last year, representing a critical workforce development component that would disappear precisely when demand for HIV care is expected to surge.
Healthcare Infrastructure Under Siege
Federally Qualified Health Centers (FQHC), serving as the backbone of HIV care in underserved communities, face an existential crisis. With Medicaid comprising 43% of FQHC revenue, the reconciliation bill threatens the fundamental business model of these safety-net providers. FQHCs currently operate on razor-thin margins approaching negative 2.2%, with 42% reporting 90 days or less cash on hand.
The rural healthcare crisis intensifies these challenges. Over 700 rural hospitals face closure risk—representing one-third of all rural hospitals—with 171 having shut down since 2005. The bill's $25 billion rural transformation fund provides only 43% of what experts calculate is needed to offset Medicaid cuts.
For HIV care, this means losing critical access points in areas already designated as priority jurisdictions for the Ending the HIV Epidemic (EHE) initiative. Research demonstrates that FQHCs in the rural South could reduce median drive time to HIV care from 50 to 10 minutes—but only if they remain financially viable. When Medicaid patients lose coverage, FQHCs must still serve them as uninsured patients by law, creating additional uncompensated care costs the facilities cannot absorb.
The 340B Program: Hidden Financial Hemorrhaging
The removal of Pharmacy Benefit Manager (PBM) spread pricing prohibitions represents a significant blow to 340B savings that HIV programs depend on for sustainability. The 340B program generated $38 billion in discounts in 2020 alone, with Ryan White clinics using these savings to serve an additional 43,000 people living with HIV.
Without spread pricing protections, PBMs can continue diverting these savings through discriminatory practices. States have documented massive overcharges: Ohio lost $224.8 million in one year, Pennsylvania $605 million over four years, and Maryland $72 million annually to spread pricing schemes. For HIV programs already operating on minimal margins, these losses represent the difference between serving patients, implementing waitlists, or shutting down altogether.
The policy intersection becomes particularly cruel when considering substance use services. While the OBBBA protects substance use disorder services from cost-sharing requirements—a "modest but important win" according to county officials—the broader context undermines these protections. Research shows 23.94% of people with HIV need treatment for alcohol or substance use, with people who inject drugs facing 30 times higher HIV risk than non-users.
Geographic and Demographic Devastation
The reconciliation bill's impacts fall hardest on communities already bearing disproportionate HIV burdens. Black and Hispanic/Latino people account for 64% of all people with HIV while representing only 31% of the population. These communities have higher Medicaid coverage rates due to lower incomes and higher disability rates, making them particularly vulnerable to coverage losses.
Southern states face a catastrophic combination of high HIV prevalence, limited state resources, and political resistance to mitigation strategies. The region accounts for 52% of new diagnoses, and includes many non-expansion states where 66% of HIV-positive adults rely on disability-related Medicaid pathways.
Nine states have trigger laws automatically ending Medicaid expansion if federal matching rates drop, creating immediate coverage cliffs. The intersection of geography, race, and poverty creates concentrated zones where HIV care infrastructure may collapse entirely, reversing decades of progress in communities that have historically faced the greatest barriers to care.
Clearly, This Isn’t About Fiscal Responsibility
The legislation represents fiscal malpractice when considering the long-term costs of new HIV transmissions. Each new HIV infection creates $501,000 in lifetime healthcare costs, while achieving 72% viral suppression would cost $120 billion over 20 years. The math is unambiguous: preventing new infections through sustained treatment is far more cost-effective than treating them after they occur.
The HIV community's response demonstrates the severity of the threat. Over 113 organizations relaunched the #SaveHIVFunding campaign, while the Partnership to End HIV, STI, and Hepatitis Epidemics united major organizations in opposition, emphasizing that "healthcare is not a reward for paperwork—it is a human right."
As NASTAD's analysis concludes, "When one of these pillars weakens, the others feel the shock waves"—and this bill doesn't just weaken pillars, it demolishes them. Without immediate action to reverse these cuts, the United States will witness a preventable reversal of decades of progress in HIV care, measured not in budget savings but in lives lost to a disease we know how to treat.
RFK Jr's Budget Testimony Reveals Concerning Vision for America's Healthcare Safety Net
In a pair of contentious congressional hearings last week, U.D. Department of Health and Human Services (HHS) Secretary Robert F. Kennedy, Jr. defended the Trump Administration's proposed fiscal year 2026 budget for HHS—a plan that would slash the department's discretionary funding by 26%, amounting to approximately $33 billion in cuts. These hearings before the Senate Health, Education, Labor and Pensions (HELP) Committee and the House Appropriations Committee provided the most comprehensive look yet at the administration's vision for reshaping America's healthcare system and safety net programs.
Secretary Kennedy's testimony, frequently punctuated by tense exchanges with lawmakers, outlined a fundamental restructuring of the federal government's role in healthcare under the banner of "Making America Healthy Again" (MAHA). The vision embraces dramatic cost reductions justified as eliminating "waste" and "bureaucracy," but the evidence suggests these changes would significantly impact access to healthcare for millions of Americans, particularly those living with chronic conditions and those from marginalized communities.
The Magnitude of Proposed Cuts
The scale of proposed reductions across HHS agencies is staggering, particularly for federal research and public health programs. The National Institutes of Health (NIH) faces an $18 billion reduction, nearly 40% of its current budget. The Centers for Disease Control and Prevention (CDC) would see cuts of approximately $4 billion. Multiple agencies would be eliminated entirely, including the Substance Abuse and Mental Health Services Administration (SAMHSA), Health Resources and Services Administration (HRSA), Administration for Strategic Preparedness and Response (ASPR), and the Administration for Community Living (ACL).
During his testimony, Kennedy framed these changes as necessary consolidations rather than eliminations: "We had nine separate offices of women's health. When we consolidate them Democrats say we're eliminating them. We're not. We're still appropriating the $3.7 billion," Kennedy told House lawmakers. He further justified the reductions by claiming that "my department grew by 38% over the last four years. I would say that's great if Americans got healthier, but they didn't. They got worse."
But the budget document itself tells a different story. The proposed restructuring would move many functions to a new "Administration for a Healthy America" (AHA) while explicitly cutting total funding. For example, the Low Income Home Energy Assistance Program (LIHEAP), which provides critical utility assistance to low-income Americans, would be eliminated entirely based on the rationale that "states have policies preventing utility disconnection for low-income households, effectively making LIHEAP a pass-through benefitting utilities in the Northeast," according to the budget proposal.
Impact on Health Coverage and Access
Perhaps most concerning are the projected impacts on health insurance coverage. The proposed budget works in tandem with the reconciliation bill currently working its way through Congress, which would impose significant changes to Medicaid and the Affordable Care Act (ACA) Marketplaces.
According to the Congressional Budget Office (CBO), these changes could increase the number of people without health insurance by 8.6 million, with the total rising to 13.7 million when combined with the expected expiration of the ACA's enhanced premium tax credits. A Kaiser Family Foundation (KFF) analysis projects that the uninsured rate would increase by 5 percentage points or more in Florida, Louisiana, Georgia, Mississippi, and Washington, with 30 states and the District of Columbia seeing increases of at least 3 percentage points.
When Senator Bernie Sanders asked Kennedy about the reconciliation bill's potential to eliminate health insurance for 13.7 million Americans, Kennedy acknowledged that people would lose coverage but characterized the cuts as "eliminations of waste, abuse and fraud." Yet when pressed for specifics, the Secretary could not provide details on several programs affected, including funding delays for Head Start, impacts on clinical trials, and cuts to childhood lead poisoning prevention.
The Mirage of Medicaid Work Requirements
Central to both the budget proposal and the reconciliation bill is the implementation of Medicaid work requirements. Under these provisions, certain Medicaid recipients would need to work at least 20 hours per week to maintain their coverage. Proponents, including Kennedy, argue this would reduce dependency and promote employment.
However, extensive research contradicts these claims. According to Congressional Budget Office's own analysis, Medicaid work requirements "would have a negligible effect on employment status or hours worked by people who would be subject to the work requirements." This aligns with the real-world experience from Arkansas—the only state to fully implement such requirements—where more than 18,000 people lost coverage while employment rates remained unchanged.
The evidence shows that most Medicaid recipients who can work already do. A KFF analysis found that 92% of Medicaid adults under age 65 are either working (64%), caring for family members (12%), dealing with illness or disability (10%), or attending school (7%). Only 8% report being retired, unable to find work, or not working for another reason.
Moreover, a recent Commonwealth Fund study projects that implementing nationwide Medicaid work requirements would have devastating economic consequences. Between 4.6 million and 5.2 million adults could lose Medicaid coverage in 2026, cutting federal funding to states by $33 billion to $46 billion in the first year. This would trigger a $43 billion to $59 billion reduction in economic activity, a loss of 322,000 to 449,000 jobs nationwide, and a $3.2 billion to $4.4 billion reduction in state and local tax revenues.
"Our findings demonstrate a paradox of Medicaid work requirement policies: rather than bolstering employment—as claimed by proponents—they could actually reduce employment and people's earnings," the study's authors conclude. These economic impacts would extend beyond just expansion states, affecting all states due to interconnected economies.
Transparency and Public Input Concerns
Beyond specific policy proposals, the administration's approach to transparency and public input has raised alarm. In March 2025, HHS rescinded the Richardson Waiver, which had been in place since 1971 and required public comment periods for certain HHS actions. Senator Ron Wyden characterized this move as a shift from "radical transparency" to "radical secrecy," saying Kennedy has "shut the gates, locking out doctors, patient advocates, and everyday Americans from weighing in on the chaotic disruption of America's healthcare."
When questioned about specific programs being cut, Kennedy repeatedly cited a court order preventing him from discussing reorganization details. Yet this didn't stop him from defending the broader vision of massive structural change, leaving lawmakers and the public with limited ability to assess the full impact of the proposals.
Implications for Patients and Advocates
For people living with chronic conditions, including HIV, hepatitis, and other serious illnesses, the proposed changes would create multiple barriers to care. Reduced funding for research could slow the development of new treatments. Medicaid work requirements could jeopardize coverage for those whose conditions make consistent employment difficult but who don't qualify for disability exemptions. Cuts to public health programs would impact prevention efforts, disease surveillance, and outbreak response capabilities.
Rural communities face particular risks, with hospital closures likely to accelerate. A recent report found that 742 rural hospitals are already at risk of closing, with over 300 classified as being at "immediate risk." Cuts to Medicaid funding would further destabilize these essential providers.
Advocates must understand that while Secretary Kennedy has stated that appropriated funds will be spent as directed by Congress, the administration's budget proposal reveals its long-term vision for drastically reducing the federal government's role in healthcare. This makes engagement with congressional representatives, particularly those on appropriations committees, absolutely critical in the coming months.
The administration's budget proposal represents a fundamental reshaping of America's healthcare safety net that would leave millions of Americans with less access to care, despite evidence that key proposals like Medicaid work requirements fail to achieve their stated goals and may actually harm state economies and healthcare systems. As policymakers debate these changes, the voices of patients and advocates must be centered to ensure that vulnerable populations are not left behind in the pursuit of government efficiency.
Beyond Medication: Tech Advances in Care Delivery
Broad telehealth acceptance is just the tip of the iceberg when it comes to technology advancements and innovations in the general health care space. From mobile Apps designed to encourage patient-provider communication and medication reminders to drone being the next home delivery pharmacy tool, much hope and concern rests on the horizon of health-in-your-hand-and-on-demand.
In this, as with many developments in care delivery and equitable access, the space of chronic care, specifically HIV, has long helped lead the way for the rest of the industry. A 2018 post on HIV.gov and 2020 post on webMD cite several mobile Apps with focuses on prevention services, linkage to care, care support, and social support. Some study has been done about effective strategies of user engagement with mobile Apps, with a particular focus on younger demographics. One such study, from University of North Carolina at Chapel Hill and Duke University, with participants ranging from 16-24 years of age, found extraordinary efficacy with a “gamifying” approach, including “badges” and “tokens” among users as rewards for adherence and completing tasks or engaging with the App. At 13 weeks, frequent users of the App were more than 56% more likely to achieve viral suppression and regular App users were more than twice as likely to self-report near perfect ART adherence at benchmark periods of the study. Another study, offering social support, with participants at or above 60 years of age across a period of 6 months showed the 30 participants accessed the App more than 2400 times for an average nearing 9 minutes per session.
Many of the studies working to understand best practices in client engagement, messaging, and positive outcomes are exceptionally limited. Beyond the cohort size, technology barriers appear to the biggest hurdles; including ensuring clients have appropriate devices for any particular App design, updated software, ensuring App accessibility across hardware platforms (phones, tablets, computers), appropriate data plans, and access to mobile data signal or Wi-Fi services.
Another avenue under exploration includes modernizing the time-tested aid delivery method of airdrops with drones to reach hard-to-reach rural area health care providers. However, as Uganda Medical Association’s secretary general, Mukuzi Muhereza, cited, drones only address medication transportation to health centers, not issues of medication shortages or transportation barriers from client homes to those same health care providers.
When given this topic for this week, my contract manager questioned “if this can be done in Uganda, why can’t it be done in rural Alabama?” Which is a good question…with lots of discussion worthy of following.
The business that cannot be escaped when discussing consumer data and tech also cannot be avoided in discussing health care delivery systems innovation: Amazon. In 2018, Amazon acquired PillPak, including all their state-based pharmacy licensing agreements, now billed toward Prime customers as Amazon Pharmacy. While posing as a potential exploration into the health care landscape, Amazon Pharmacy’s effort builds upon a concurrent effort to make the company’s voice assistants HIPAA compliant. However, much of Amazon’s effort don’t necessarily fall inside the entity scope requiring patient privacy compliance as HIPPA and explicitly cites compliance with law enforcement activities, recalling community fears associated with molecular surveillance and the criminalization of HIV status. Particularly, Amazon has been known to exploit its collection of user data for the sake of profit, skirt regulatory requirements on technicalities and mutilation of language, and frankly, lacks ethical grounds worthy of potentially courting government funding in light of its anti-labor practices. Additionally, Amazon has faced numerous data breaches in the last few years and European Union former executives for Amazon have warned the company does not do enough to ensure security of users’ information. Garfield Benjamin gives a deeper dive into the history and context of these concerns, many already experienced in the United Kingdom, here.
That doesn’t mean Amazon, or any company making similar inroads into direct-to-consumer care models, is “always” a bad actor. Indeed, with the Federal Aviation Administration’s recent approval to study Amazon’s drone delivery system, known as Amazon Air, the possibility of delivery to your door within the hour of an appointment is deeply appealing to many consumers seeking easier access to medication. It just means the risks of the moment, of unanswered questions and unregulated technicalities needs to be addressed – and with expediency. Because just as with injectable ARVs being the next wave of innovation in ARVs, streamlining the consumer experience with greater privatization and expanded home delivery options is also on the horizon.
We have this brief moment, now. Where the mega-movers, like Amazon, and regulators, can reach outside of the provider and payer communities and discus with patient and consumer communities to ask us what we’re worried about. If public payers are not prepared to integrate appropriate reimbursements, leverage those reimbursements to ensure our privacy and access to care, to further Health Justice, then we run the risk of only furthering existing disparities, even more than COVID has. Between the rural hospital crisis only deepening and the Biden administration already running into push back on including expanding broadband access in its infrastructure package, as easy examples of the necessary “what-abouts” if we’re to meet this moment for its actual potential – for either good or ill.
Stakeholders across the spectrum should look beyond any development of their own proprietary App functions and into the broadest approach to this space to ensure consumer trust is maintained as one of the highest priorities, collaborative rather than competitive efforts so as not to duplicate efforts or get lost in the sea of App developments, and ensure our technology reflects our values as communities, not just that of those who may find new avenues of profit on our backs.