Travis Manint - Communications Consultant Travis Manint - Communications Consultant

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.

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Travis Manint - Communications Consultant Travis Manint - Communications Consultant

War-Torn Ukraine Beats U.S. on Integrated Addiction Care

At Strizhavka Detention Center in central Ukraine, vending machines dispense clean syringes to inmates while Russian missiles target infrastructure just hours away. It's a remarkable scene: a country under active invasion operates one of the world's most progressive harm reduction networks, achieving an 81% reduction in AIDS mortality since 2010 and zero new HIV infections in prisons with needle exchange programs. Meanwhile, the United States continues to trap vulnerable patients in a fragmented maze of disconnected systems that increases costs, worsens outcomes, and reflects a fundamental failure of political will to prioritize evidence-based care coordination over institutional preservation and stigma-driven policy making.

Ukraine has mastered what public health experts call syndemic response—addressing the interconnected epidemics of substance use disorders, HIV, hepatitis C, and tuberculosis through innovative, integrated solutions. In war-torn Ukraine, where Russian missiles regularly destroy infrastructure, a person with opioid addiction can access methadone through any pharmacy with a prescription and receive 30-day take-home supplies during crisis periods. In Louisiana, that same person might spend months navigating separate systems for addiction treatment, HIV care, and basic healthcare—if they can access treatment at all. While Ukraine maintains comprehensive services under active invasion, Louisiana saw drug overdose deaths quintuple from 401 to 2,376 between 2017 and 2022. This divergence reveals a fundamental truth: healthcare fragmentation represents a policy choice, not an inevitability.

Ukraine's Integrated Model: Coordination Under Fire

Ukraine operates Europe's most comprehensive harm reduction network, serving 250,000+ vulnerable people through coordinated government-civil society partnerships. The system's architecture connects HIV testing, hepatitis C screening, opioid substitution therapy (OST), and substance use disorder treatment into one seamless framework coordinated by the Alliance for Public Health Ukraine.

Beyond Strizhavka, the integration model extends across the country's correctional system. The Free Zone organization now operates similar programs in 56 Ukrainian prisons, a radical departure from punitive approaches that have defined American corrections. Ukraine trains incarcerated people as peer counselors, with 77 certified social workers among more than 400 inmates trained through the program.

Mobile testing units exemplify the wraparound approach. Inside vans parked outside Kyiv methadone clinics, social workers help clients test themselves while offering take-home tests for partners—a simple intervention that dramatically expands testing reach. One client, Mykolai, can earn small payments for testing and receive cards to distribute to friends, slowly building a self-sustaining testing network that operates independently of formal healthcare systems.

War forced remarkable adaptations that reveal the system's flexibility. Solar panels now power clinics to ensure uninterrupted service during blackouts. The HelpNOW digital platform coordinates care for 30,000+ displaced Ukrainians across 52 countries, ensuring treatment continuity despite massive population displacement. As one incarcerated person described the transformation, "civilization came to this place" through these integrated services.

Louisiana as U.S. Fragmentation Case Study

Louisiana exemplifies how U.S. system fragmentation creates insurmountable barriers for vulnerable patients despite having what advocates describe as "one of the best coordination of care situations across the country." The state serves 22,920 people living with HIV across a fragmented regional system where Ryan White programs operate across Regions 3-9 for Part B funds, with separate Part A grants for Greater New Orleans and Baton Rouge, and Parts C and D funded at local clinic and community organization levels.

This multi-layered approach creates coordination nightmares where patients must navigate different systems depending on their geographic location and specific service needs. The fragmentation's impact is clear, as CANN CEO Jen Laws explains: "One of our biggest barriers in this country is that the segregation of our programs do not encourage engagement in care. Indeed, they create such administrative burden on the patient alone that people fall out of care all the time. When someone goes to a space they're supposed to trust, the 'experts' managing their care, with a problem and get told to run around more and more and more, trust disintegrates. Getting the care you need shouldn't be a full-time job.”

The human cost manifests in stories like Jessica Baudean and Terry Asevado, methadone patients who face extraordinary barriers to daily treatment access. Baudean, who is disabled and lives in Avondale, must rely on Medicaid transportation when available or have Asevado push her wheelchair 1.4 miles to the nearest bus stop, then spend an hour taking two buses to reach the only clinic on the city's East Bank authorized to dispense their medication. If they arrive even a minute past noon, they miss their dose. If they miss a dose, they may be denied the next one—a punitive approach that penalizes the very disability and transportation barriers the system creates. When Asevado was arrested in Jefferson Parish, Baudean described her partner's inevitable suffering: "Poor Terry, I know he's still going to be sick right now." The Jefferson Parish Sheriff's Office lacks coordination with local methadone clinics despite federal regulations permitting continued treatment, forcing people in custody into painful and dangerous withdrawal.

Nationally, only 39% of Ryan White clients have Medicaid as their primary payer, indicating massive gaps in coverage coordination. Research reveals that fragmented care costs $4,542 more annually per patient—$10,396 versus $5,854 for coordinated systems. Patients face duplicative eligibility verification, inconsistent prior authorization requirements, and limited data sharing between systems, with 73% of insured adults performing administrative healthcare tasks annually.

For returning citizens—formerly incarcerated people—the barriers multiply exponentially. Despite HIV prevalence among incarcerated populations being three times the general population rate, only 18.9% of criminal justice-involved people with substance use disorders receive treatment. Among those released from Texas prisons, just 5% maintain medication continuity within two months, creating catastrophic treatment disruptions precisely when continuity matters most.

Political Backlash and Current Threats

Even traditionally supportive states are retreating from harm reduction while federal policy accelerates toward punitive approaches. Oregon's House Bill 4002 reinstated criminal penalties with up to six months jail time for possession, largely repealing its pioneering decriminalization measure. California voters passed Proposition 36, rolling back criminal justice reforms despite opposition from harm reduction advocates.

Federal policy under the Trump administration has dramatically accelerated this retreat. The Department of Health and Human Services (HHS) announced $11.4 billion cuts to addiction and mental health programs, while the Substance Abuse and Mental Health Services Administration (SAMHSA) faces $1 billion in immediate cuts with 20,000 planned staff reductions. The 2026 budget proposal explicitly criticizes harm reduction, stating SAMHSA grants "funded dangerous activities billed as 'harm reduction.'"

This political momentum contradicts public opinion. Bipartisan polling shows 79% support for medication-assisted treatment and 64% for overdose prevention centers. However, partisan breakdown reveals deep divides that complicate political feasibility, with Democrats supporting overdose prevention centers by 67 points but Republicans by only 2 points.

The resistance reflects deeper currents of moralizing medical conditions like substance use disorders and HIV—a toxic legacy of moral majority politics that treats addiction as moral failing rather than health condition. This moralization couples with America's fetishization of policing and punishment, creating an undercurrent of ill will toward helping people dealing with these issues. Congressional dynamics offer little hope for reversal. House Republicans proposed the provocatively named "Crack is Whack Act" to explicitly ban safe consumption sites nationwide, while the federal "crackhouse statute" continues blocking evidence-based interventions. This political landscape creates a paradox: public health crises that should unite communities instead become wedges for division when filtered through moral judgment rather than medical evidence.

Systemic Barriers and Misaligned Incentives

U.S. healthcare fragmentation persists through structural design flaws embedded in historical decisions that separated substance use treatment from mainstream medicine. This separation created what researchers describe as "insular fields with inadequate communication, coordination, and collaboration." Multiple funding streams—federal, state, and local government (42%), Medicaid (21%), Medicare (5%)—operate under different rules with incompatible requirements.

Financial incentives actively maintain fragmentation. Fee-for-service payment models reimburse discrete services rather than coordinated care, with administrative burden consuming 50% of physician time. Technology failures compound human ones: despite decades of electronic health record adoption, 48% of hospitals share data with other organizations but receive nothing in return.

Worse yet, provider stigma compounds structural barriers. Systematic reviews document that 20-51% of healthcare professionals hold negative attitudes toward people with substance use disorders. Privacy regulations like 42 CFR Part 2—federal rules that create stricter confidentiality protections for substance use treatment records than standard medical records—create additional barriers to integration by requiring separate consent processes and record systems for substance use treatment, despite 2024 reforms aimed at improving coordination.

The Moral Test of Healthcare Policy

Ukraine's wartime harm reduction success exposes American policy failures as choices, not inevitabilities. A country under active invasion maintains better care coordination than the world's wealthiest nation during peacetime. This contrast reveals how political will, not resources, determines outcomes.

Successful integration models do exist within the United States. Vermont's Hub and Spoke model achieves the nation's highest opioid use disorder treatment capacity—10.56 people in treatment per 1,000 population. Nine regional "Hub" clinics provide specialized services while 87+ "Spoke" sites in primary care settings offer office-based treatment, ensuring appropriate care levels while maximizing capacity.

Breaking this deadlock requires acknowledging that healthcare fragmentation reflects deeper societal decisions about who deserves care. Yet even modest reform efforts face existential threats as Congressional Republicans advance unprecedented cuts to programs serving the most vulnerable Americans. The proposed $1.1 trillion in Medicaid reductions would devastate services for 71 million people, prompting callous dismissals from GOP leaders like Senator Mitch McConnell, who told worried colleagues that voters will "get over it" when they lose healthcare coverage. Iowa Senator Joni Ernst doubled down on this cruelty, telling constituents concerned about Medicaid cuts that "we all are going to die" and posting a sarcastic apology video filmed in a cemetery. These responses reveal the moral bankruptcy underlying American healthcare politics—treating life-sustaining programs as political footballs while dismissing the human consequences with shocking indifference.

Ukraine has shown that even under the most challenging circumstances imaginable, integrated care saves lives and money. American policymakers have no excuse for maintaining systems that force vulnerable patients to navigate bureaucratic mazes while their health deteriorates, especially when the alternative being offered is abandoning them entirely through devastating cuts that prioritize tax breaks for the wealthy over basic human dignity.

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Jen Laws, President & CEO Jen Laws, President & CEO

Feds Launch National HIV/AIDS Strategy Implementation Plan

On August 26th, the White House Office of National AIDS Policy (ONAP) director, Harold Phillips, announced publication of the Federal Implementation Plan for the National HIV/AIDS Strategy. A “dear Colleague” letter was circulated among advocates shortly before the announcement and Mr. Phillips discussed the release of the implementation plan via recorded video, published to the federal government’s HIV.gov blog.

Significantly, the implementation plan details more than 380 action items from 10 different federal agencies and specifically adds focus issues of quality of living among people living with HIV/AIDS (PLWHA) which will be added to the Medical Monitoring Project’s data tables in 2023. Many of the action items detailed include education and outreach and coordination of efforts between affected federal agencies and state partners. Much of this work intersects with the Biden Administration’s efforts to address health equity and disparities, given the disproportionate representation of marginalized communities affected by HIV.

For most advocates, the announcement was a “mixed-bag” of good news and frustration at planning that primarily highlights assessments and monitoring where data may already exist or where advocates have already outlined more concrete steps they wish the federal government to take. For example, advocates and the federal government is well-aware that thanks to the advancements in quality of medications to treat HIV and being able to keep more patients engaged in care, the population of PLWHA is generally much older than they were in say…2000. However, our planning and supports for this aging population is not sufficiently strong. Medicare integration and coverage of support services specific to PLWHA is lacking and the federal government has had to engage in repeated enforcement actions against skilled nursing facilities and assisted living facilities, both regarding the refusal to provide services to PLWHA and the failure to have adequate services for PLWHA in the facility’s care.

The new quality of life metrics focus on issues of mental health, behavioral health support, food insecurity, unemployment, and unstable housing for PLWHA, with the last 3 items being considered “structural/subsistence” issues for patients. These items are arguably significantly intertwined and success or failure in any may implicate success or failure in all of these items.

In order for the federal government’s efforts to meaningfully move forward, these plans should be treated as a roadmap, rather than actions themselves. One of the things we are very good at in HIV is planning and processing. Where efforts tend to fall short is in implementation and in order to improve implementation, we need to identify if those failures to implement are due to lack of appropriate resources, expertise, or conflicting federal and state policies and priorities. Advocates should seek to hold our friends at ONAP and other agencies accountable to proactive action in defending the rights of PLWHA as patients and acting on appropriate integration of care for our aging colleagues and friends – both in terms of ensuring existing entities serving an aging population are aware of how to care for PLWHA and in ensuring entities serving PLWHA are adequately supported to care for an aging population.

In assessing effective uses of limited resources and the plan’s goals toward meeting these quality of life metrics, advocates and the federal government should consider how to leverage the Ryan White program as a workforce development and employment opportunity in order to help lift patients and highly affected communities out of poverty and, in so doing, addressing the other listed quality of life metrics. The 2021 (fiscal year) budget for the Ryan White program is $2.4 billion (not including AIDS Drug Assistance Programs). Those dollars, when focused on employing people living with and at risk for HIV, those who would otherwise be or are already Ryan White clients, would provide a significant opportunity to address these quality of life concerns and meaningfully put these dollars to use in the community the funds are meant to serve.

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Marcus J. Hopkins Marcus J. Hopkins

The Time Has Come to Centralize HIV Services in West Virginia

My name is Marcus J. Hopkins, and I have been living with HIV since 2005. While I’m not considered a “long-term survivor” of HIV—a term deservedly ascribed to People Living with HIV/AIDS (PLWHA) since the 1980s or 1990s—my experiences receiving treatment for HIV through the Ryan White HIV/AIDS Program (RWHAP) and AIDS Drug Assistance Program (ADAP) have run an interesting gamut across five states: Georgia, Florida, Tennessee, California, and West Virginia. Across those five states, I have experienced a wide variety of HIV services provision over the course of being in HIV treatment since 2007, and can truly attest to the adage, “When you’ve seen one ADAP, you’ve seen one ADAP.”

Over the course of sixteen years of receiving services through the RWHAP and ADAP programs, several things have changed:

  • Providers no longer wait until a patient receives an AIDS diagnosis to initiate HIV Antiretroviral Therapy (ART)

  • Treatment regimens have largely transformed from multi-pill regimens to single-pill regimens and even long-term injections requiring once monthly or every other month injections

  • The emergence of Pre-Exposure Prophylaxis (PrEP)—a once-daily pill or once-monthly or every other month injection to prevent the transmission of HIV between serodiscordant sex partners—means that the possibility of no new diagnoses is a distinct possibility within our lifetimes

  • The threat of waiting lists to receive treatment and services is largely a thing of the past

  • The passage of the Affordable Care Act (ACA, or “Obamacare”) allowed state ADAP programs to pay the premiums and co-pays for private insurance for eligible clients

  • The passage of the ACA also allowed states to expand Medicaid in such a way that PLWHA are now automatically covered by state Medicaid programs, rather than ADAP. To date, 39 states have expanded their Medicaid programs (Kaiser Family Foundation, 2022)

And yet, despite all of these advancements, issues remain, particularly in rural parts of the country where even basic medical services are limited, much less HIV-specific services. Such is the case for my home state of West Virginia.

Since returning to West Virginia from Los Angeles in 2013, my experience with this state’s HIV services has been…fraught, at best. I can’t complain about the quality of care I’ve received, here; I can say that qualifying and recertifying for the various RWHAP parts is made extremely cumbersome.

You see, in the state of West Virginia, there is one organization that handles Ryan White Part B (basically, the ADAP program) for the entirety of the state. This entity is separate from the clinics that provide Part C and Part D services (outpatient care and the provision of medical care and support services for low-income women, children, and youths with HIV and their families, respectively). And THOSE entities are entirely separate from the Part F services, which cover education, HIV treatment projects, dental programs, and the Minority AIDS Initiative. And even THOSE entities are entirely separate from the ones that provide services for the Housing Opportunities for People with AIDS (HOPWA) program that provides various housing and utility assistance services for PLWHA.

So, let’s do a quick recap: in order to receive the full breadth of services to which most PLWHA are eligible in the state of West Virginia, one must engage with at least four separate entities. This doesn’t even address nutrition assistance, non-emergency medical transportation for visits, and other supportive services.

This is a problem.

It is a problem for patients; it a problem for providers; it is a problem for the HIV Care Continuum (United States Department of Health and Human Services, 2021); it is a problem for HIV surveillance and prevention.

As far as I can tell, this problem seems kind of unique to West Virginia. West Virginia never saw the proliferation of AIDS Service Organizations (ASOs) that most of the rest of the country saw during the 1990s and early-2000s. While the rest of the country and especially surrounding states saw an influx of new 501(c)(3) non-profit organizations and clinics step in to provide the wide swath of HIV case management, clinical, behavioral health, and supportive services, West Virginia’s services developed in inefficient siloes that left patients scrambling to figure out the veritable pantheon of providers necessary to get the services for which they are eligible.

By comparison, in the northeastern region of the state of Tennessee (still deep in Appalachia), Ryan White caseworkers went out of their way to assist with every aspect of HIV care, from enrollment in the program to clinical services to mental health services to dental services to HOPWA services to enrolling in nutrition assistance programs—they did it all. The same was true of my experiences in California and Florida.

In West Virginia, however, every aspect of seeking and qualifying for HIV services requires patients to perform an intricate and ever-changing ballet, the steps for which they are never taught. Because there are so few providers of these services, when patients experience issues, there aren’t really any other avenues to turn to for assistance.

This has become the case with one of West Virginia’s terribly mismanaged HOPWA grantees.

Again, unlike virtually every other state in the U.S., HOPWA services in West Virginia are not seated within the HIV treatment and services infrastructure, insufficient as it is, but within various organizations dealing with homelessness, such as Covenant House and the West Virginia Coalition to End Homelessness. Comparatively, in other states, referral to and enrollment in the HOPWA program is handled by ASOs, who work in concert with state housing agencies to assist with housing issues.

Over the course of the past few years, when one of West Virginia’s HOPWA service providers stopped paying housing and utility payments in a timely manner, patients had nowhere to turn without having to go through multiple channels to resolve their issues…but not even really resolve them; just lodge a complaint. Those HOPWA clients would have had to complain, first, to the very agency that failed to return their panicked calls, as they lost their housing or their electricity was cut off; instead, they had to jump through several different hoops just to find out where to go to complain—the regional office in Pittsburgh, PA, which initiated an investigation which, frankly, doesn’t do anything for those who are trying to get their rent paid or their electricity reconnected.

The time has come for the formation of not one, but several ASOs in the state of West Virginia to centralize these services. It is unconscionable that a state with a burgeoning HIV infection rate should have such a disorganized and disjointed service provision landscape. The time has come to centralize services at these ASOs, lest we continue to beat numerous dead horses and fail to serve those living with HIV.

 

Sources:

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