Who Holds the Cards in America’s Medical Debt Crisis?

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

An updated Urban Institute report found that more than 1 in 4 adults (26.6%) reported owing medical debt, including more than 1 in 7 (15.4%) with past-due medical bills or bills they can't pay. Karpman also found that more than half (52.1%) of medical debt was owed to hospitals, though many respondents also held debt for specialist services (41.5%), dental care (37.6%), and general doctor visits (33.5%) (Karpman, 2026).

Source: Grammarist

These findings echo ADAP Advocacy’s 2025 research, which found that 74% of respondents held medical debt, 39% of whom owed debt to hospitals. ADAP Advocacy’s research went a step further: we asked whether hospitals made patients aware of financial assistance available to help them afford their services. The overwhelming majority of respondents (87.5%) said they either had not been informed or did not remember being informed by a hospital employee that their healthcare services might be eligible for the hospital’s charity care program (Macsata et al., 2025).

One of the only available metrics by which 340B Drug Pricing Program-eligible hospitals can be measured is how much they spend on “charity care”—the provision of healthcare services at cost. Recent research by the policy think tank Pioneer Institute found that 340B hospitals spent just 2.16% of operating expenses on charity care, compared with 2.82% at non-340B hospitals (Popovian et al., 2026).

The American Hospital Association (AHA) responded to these findings with their standard talking points, as 340B hospitals have long argued, that charity care is not the only metric by which they should be measured when serving patients and communities (Hughes, 2026).

Source: Urban Institute

This statement, however, should be met with significant skepticism.

In addition to arguing that charity care is a poor metric for assessing community benefit, 340B hospitals have also fought vehemently against any efforts to reform the 340B program that require them to be transparent about how the program's revenues are used.

In fact, hospitals appear to believe that any sort of transparency will lead to institutional anaphylaxis. To date, more than half of American hospitals (51%) are out of compliance with a 2019 law requiring all hospitals to establish, update, and make public a list of all standard charges for all items and services (Pifer Parduhn, 2026; Hospital Price Transparency, 2026).

The reality appears to be that hospitals are doing everything in their collective power to avoid making public any information that would hold them accountable. This makes sense when we consider that, although they’re listed as non-profit companies, hospitals are in the business of making profits. Transparency requirements, whether related to pricing or expenditures, would open them to scrutiny and uncomfortable questions about cost and corner-cutting, service reductions, and executive compensation.

And truly, so long as the penalties remain civil monetary penalties (e.g., fines)—particularly if those penalties are as low as $300 per day (with $5,500/day being the maximum) for noncompliance with the price listings (Hospital Price Transparency, 2026)—nothing will change. Until the penalties for noncompliance include severe financial penalties and/or the revocation of eligibility for 340B.

Moreover, medical debt is unlikely to go away and is highly likely to spiral out of control.

Source: The Commonwealth Fund

For patients who purchase health insurance plans through the Affordable Care Act marketplace, insurers are proposing a median 15% premium increase for 2027 after raising premiums by more than 20% in 2026 (Pogue et al., 2026). In addition, the Trump Administration’s affinity for economic tariffs may be contributing to price increases, particularly at hospitals that spend 10.5% of their annual budgets on imported medical supplies and pharmaceutical products (Hider et al., 2026).

Here is where 340B revenues can, and should, go: helping eligible patients defray out-of-pocket medical expenses. In this way, 340B can be the glue holding our healthcare system together. One of the greatest barriers to using the program this way is the opacity of how 340B revenues are used. As the debate over the 340B Program continues, maybe the time has come to shift the program's paradigm to a "money follows the person" framework, modeled after Medicaid's Money Follows the Person (MFP) demonstration. The medical debt crisis...hospital debt crisis... will not go away on its own.

Learn more about ADAP Advocacy’s proposals for common-sense 340B reforms in our recent white paper:

340B PROGRAM: The Glue That Should Hold Our Healthcare System Together

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Hider, A. M., O’Connell, D., & Berlin, N. L. (2025, September 18). Tariffs: Added Strain On The US Health Care System. Health Affairs: Forefront. https://www.healthaffairs.org/content/forefront/tariffs-added-strain-us-health-care-system

[2] Hospital Price Transparency, 45 C.F.R. pt. 180 (2026). https://www.ecfr.gov/current/title-45/subtitle-A/subchapter-E/part-180

[3] Hughes, J. (2026, September 25). 340B hospitals lag behind peers in charity care spending: report. Newton, MA: Healthcare Dive: News: Dive Brief. https://www.healthcaredive.com/news/340b-hospitals-lag-behind-peers-in-charity-care-spending-report/831394/

[4] Karpman, M. (2026, October 06). More than One-Quarter of US Adults Had Medical Debt in 2025. Washington, DC: The Urban Institute: Research. https://www.urban.org/research/publication/more-one-quarter-us-adults-had-medical-debt-2025

[5] Macsata, B. M., Laws, J., Hopkins, M. J. & Sosa, J. (2025, April). Patient Medical Debt: Findings from Quantitative Patient Survey in the United States. Washington, DC: ADAP Advocacy. https://www.adapadvocacy.org/s/2025_ADAP_Project_RW_340B_Asset_17_Medical_Debt_Survey_Report_04-23-25-gfhj.pdf

[6] Macsata, B. M., Anthony, G., Hopkins, M. J., & Sosa, J. (2026, June). 340B Program: The Glue That Should Hold Our Healthcare System Together. Washington, DC: ADAP Advocacy. https://www.adapadvocacy.org/s/2026_ADAP_Project_RW_340B_Asset_32_340B_Glue_Should_Hold_Healthcare_Together_061526.pdf

[7] Pifer Parduhn, R. (2026, September 11). More than half of hospitals still not fully compliant with price transparency rules: report. Newton, MA: Healthcare Dive: News: Dive Brief. https://www.healthcaredive.com/news/hospital-compliance-price-transparency-regulations-pra-report/830087/

[8] Pogue, S., Knapp, A., & Giovanelli, J. (2026, October 08). More ACA Premium Spikes to Come in 2027 Amid Federal Policy Changes. New York, NY: The Commonwealth Fund: Blog. https://www.commonwealthfund.org/blog/2026/more-aca-premium-spikes-come-2027-amid-federal-policy-changes

[9] Popovian, R., Sydor, A. M., Czubaruk, K., Walker, M., & Smith, W. (2026, September 24). The 340B Accountability Gap: Charity Care, Uncompensated Care, and Medicaid Patient Volume Among 340B and Non-340B Hospitals: What the Data Mean for 340B Accountability and Reform. Boston, MA: The Pioneer Institute: Pioneer Health. https://pioneerinstitute.org/wp-content/uploads/2026/09/2026-09-08-Cancer-Care-340B-Paper.pdf

'ADAP Saves Lives: End the Wait' National Advocacy Campaign Moves Into Full Gear

By: Michelle Anderson, MA, Grassroots Advocacy & Patient Storytelling Consultant, ADAP Advocacy

For people living with HIV, access to medication is personal…deeply personal. It means staying healthy, caring for family, working, and planning for the future. When access is threatened, discussion of program funding becomes a much more immediate question: Will my next prescription be available when I need it?

The AIDS Drug Assistance Program (ADAP) exists to help eligible people living with HIV/AIDS access treatment they otherwise could not afford. For those of us who depend on this assistance, or previously relied on it, qualifying should provide some reassurance. The return of ADAP waiting lists has brought back a fear that many longtime advocates remember. Qualifying for assistance does not bring peace of mind when the assistance itself is out of reach.

Source: NASTAD

After 13 years, people living with HIV/AIDS in two states are once again being denied access to care and treatment because ADAP is running out of money. According to the National Alliance of State and Territorial AIDS Directors’ ADAP Watch, Iowa and Utah have ADAP waiting lists.

These experiences are why patient voices must remain central to the response. People living with HIV understand what consistent treatment makes possible. Their knowledge can help lawmakers understand the consequences of funding decisions and recognize the need to act before people lose access to care.

A Renewed Campaign Built on Years of Advocacy

ADAP Advocacy’s 'ADAP Saves Lives: End the Wait' national advocacy campaign is moving full gear again. Created in 2009 in response to 99 clients on ADAP waiting lists, the campaign reactivated in June 2026. Its message remains unchanged: no one should be told to wait for lifesaving medication.

Over the last several months, much of the campaign’s work has happened behind the scenes. ADAP advocacy has been rebuilding grassroots networks across six key states while simultaneously reconnecting with advocates and strengthening the relationships needed to move people into action. That work takes conversations, follow-up, and trust. It also means making sure people living with HIV/AIDS help shape the response. It also means ADAP Advocacy offering help to advocates in these states, rather than trying to march in and dictate strategy.

Source: ADAP Advocacy

The 'End the Wait' campaign has also created opportunities for communities to come together and speak up. Pennsylvania is one of the six key states where the campaign is focused on protecting ADAP access as funding shortfalls force eligibility and drug formulary restrictions that threaten care. These cost containment strategies are the invisible waiting lists in this struggle. In Pittsburgh, ADAP Advocacy held a Community Town Hall Meeting and a subsequent Health Fireside Chat focused on these challenges and their impact on people who depend on ADAP. The campaign’s newest public service announcement brought those conversations to a wider audience with a clear message: access to lifesaving HIV medication must be protected. These efforts are helping turn public awareness into support for action.

Connecting Information with Action

As the 'End the Wait' campaign expands, a newly announced interactive AIDS Drug Assistance Program Grassroots Advocacy Hub gives advocates a central place to find information and coordinate their efforts. It brings state-focused updates and campaign materials together so patients and community partners can better understand the issues and share them with others. Resources include advocacy and social media toolkits, communication and calendar-sharing tools, and other resources that organizations and individuals can use with their networks. Having these materials in one place makes it easier to bring accurate information into community conversations and keep attention on the need for reliable access to treatment.

The AIDS Drug Assistance Program Grassroots Advocacy Hub features resource centers for Florida, Illinois, Iowa, Pennsylvania, Texas, and Utah, at least to start, helping advocates take the next step. The Congress lookup identifies Members of Congress, so people know which offices to contact, while the global calendar highlights upcoming events and opportunities to participate. These features connect learning about an issue with practical ways to act. The hub is available online at https://www.adapadvocacy.org/adap-saves-lives.

Building A Collective Demand for Treatment Access

ADAP Advocacy’s 'ADAP Saves Lives: End the Wait' national advocacy campaign focuses on convincing Congress to fully fund the AIDS Drug Assistance Program. To that end, a national sign-on letter calling for an additional $175 million is now being circulated for signatures!

Source: liveabout dot com

Protecting access to HIV treatment takes support from across the community. Housing providers, food assistance programs, mental health organizations, reproductive health advocates, disability rights groups, and faith communities serve many of the same people. By adding their names to the national letter, these organizations can join a collective call to protect ADAP’s across the country.

The letter, in part, reads:

"We are concerned that federal investment hasn’t kept pace with the program's changing fiscal demands. Even as more clients enroll and healthcare costs climb, federal funding for ADAPs has remained essentially flat since 2014. In inflation-adjusted terms, that erosion has reduced the federal investment's purchasing power to roughly the level it had in 1999. As a result, states are resorting to lowering income limits, restricting access to antiretroviral treatment options, and removing access to medications used to treat comorbid conditions, including diabetes, cardiovascular disease, and chronic kidney disease."

Click here to read the full letter.

Click this link to add an organization to the national sign-on letter. Signatures are limited to organizations, not individuals. Organizational signatories are being added on a rolling basis.

Individuals can use the patient resource center’s advocacy widget to contact their legislators and urge them to fully fund ADAP.

Bringing the Conversation to Texas

The campaign’s organizing efforts will continue with a virtual statewide Texas Community Town Hall Meeting on Wednesday, November 18, 2026, from 7:00 pm to 8:00 pm CENTRAL TIME. The meeting is open to the public and will focus on access-to-care and treatment challenges involving the Texas HIV Medication Program, the state’s ADAP.

Patients, providers, community organizations, families, and allies across Texas are encouraged to participate. Their experiences can help identify barriers, inform advocacy, and keep the needs of people living with HIV at the center of the discussion.

Source: ADAP Advocacy

Visit ADAP Advocacy's Events page to register: https://www.adapadvocacy.org/events/2026/townhall/texas.

Conclusion

The 'ADAP Saves Lives: End the Wait' national advocacy campaign, centered around patients and their lived experiences with ADAP, ensures that the voice of people living with HIV/AIDS shall always be at the table and the center of the discussion. HIV advocates have faced this uncertainty before, and they’ve always risen to the challenge. That is what needs to happen now! ADAP Advocacy is doing its part by building state grassroots efforts, making user-friendly advocacy resources and tools available, hosting community town hall meetings, spearheading an organizational national sign-on letter, and complementing the work already being done at the state and community levels.

ADAP SAVES LIVES… END THE WAIT!

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

What’s Affordable, Anyway?

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

New polling data from the Kaiser Family Foundation (KFF) found that the cost of living—particularly healthcare and gasoline costs—is at the top of Americans’ minds as the U.S. heads into the 2026 mid-term elections. KFF found that, when asked if they were worried about being able to afford different basic needs, 60% of respondents indicated that healthcare costs, including the costs of health insurance and out-of-pocket expenses, such as office visits and prescription drugs, were of most concern, followed by 59% of respondents indicating that gasoline and transportation costs were top of mind (Schumacher et al., 2026).

Source: Gallup

This raises a key question with which few are willing to grapple:

How are we defining “affordable”?

In the strictest sense, “affordable” means something is priced low enough to be easily paid for or purchased.

But this raises another important question:

Affordable for whom?

According to Donald J. Trump, “The word ‘affordability’ is a Democrat scam” (Revell, 2025). He’s also called the concept of affordability a “fake narrative,” a “hoax,” and a “con job” (Green, 2025).

None of this is surprising, as the president has never had to “afford” anything in his entire life; nor, apparently, have any key members of his administration, including Trump Secretary of the Treasury, Scott Bessent, who claimed that Americans should be worried about affordability because, “…the Biden Administration destroyed affordability” (Wang & Farrow, 2026).

This has been the refrain of Republicans at both the state and federal levels since time immemorial: when costs increase during a Republican administration, it is always the fault of Democratic policies and politicians, regardless of how long Republicans have been in power and irrespective of objective reality.

But let us not lay the blame of unaffordability directly at the feet of just Republicans. Democrats have regularly abused the word “affordable,” with the naming of the Affordable Care Act (ACA) serving as one of the primary examples of how simply slapping the word “affordable” on something does not make it affordable. Despite its promises to control healthcare cost growth, national healthcare expenditures (in 2024 U.S. dollars) have soared from $3.83 trillion in 2014, when much of the ACA took effect, to $5.28 trillion in 2024 (Rakshit et al., 2026).

The issue with affordability is that it is largely subjective: when you’re poor, virtually nothing is “affordable” unless it’s free; when you’re wealthy and don’t have to worry about choosing food or healthcare, your concept of affordability skews toward your own experiences.

And maybe this is the crux of the issue: the people who set the policies that affect prices—from filing fees to taxes to tariffs to rates for goods and services—live in a bubble where “affordability” is largely an afterthought.

Source: Institute for New Economic Thinking

Despite consistent promises made by every presidential administration since the 1970s’ stagflation crisis to make life more affordable for Americans, nothing seems to change, in no small part because the private entities that set prices for food, healthcare services, and medications are often the largest donors to American politicians. When it comes time to craft meaningful legislative and administrative solutions to actually make life affordable, those donors expect obeisance from the officials they’ve purchased.

When it comes to healthcare costs, the same truths come into sharper focus. Few other industries are so regularly and publicly asked to substantiate the costs of their services to the American public—or Congress—than actors in the healthcare space. Health insurers, pharmaceutical manufacturers, and hospital industry representatives are often required to show up and justify why costs are so high, but little decisive action to reduce costs for consumers is ever taken; instead, we get political theater, even when both political teams come out swinging against the healthcare industry, and no real changes.

Why is that?

The simplest explanation is that nobody wants to truly upset the two proverbial apple carts:

The first apple cart holds the industries that provide healthcare services to Americans. In 2024, healthcare expenditures in the U.S. accounted for 18% of economic spending as a percentage of Gross Domestic Product (GDP), and that number is expected to grow to 21% by 2034 (Peter G. Peterson Foundation, 2026). Moreover, the U.S. healthcare system depends heavily on various funding mechanisms, such as the 340B Drug Pricing Program, for survival, meaning that trying to solve the healthcare affordability crisis by addressing just one aspect of healthcare services could cause another to collapse.

For example, 340B-eligible hospitals argue that if they are forced to demonstrate they are using 340B revenues appropriately, they will have to close locations. Why? Because that level of transparency would cost them their eligibility.

But this isn’t just the argument made by hospitals. Virtually any policy that is designed to lower costs for consumers is met with thinly veiled threats by healthcare industry players:

The most common refrain we hear from pharmaceutical partners is that any price controls introduced in the U.S. will force them to slow innovation, slow or halt drug development, or simply take products off the market. Health insurers echo this refrain, arguing that any attempt to force them to lower premiums and deductibles will force them to close operations and leave people without health insurance coverage.

This makes the first apple cart particularly pernicious: healthcare industries are more than willing to threaten service reductions or closures when their profits are threatened.

The second apple cart holds the donors that can make or break political campaigns.

Source: Politico

It’s hard to demand substantive changes from those who have paid their way into office, or who have used their position to enhance their personal wealth. When industries are allowed to bankroll politicians—actions that have been deemed “protected speech” by the U.S. Supreme Court—it’s not surprising that they then expect those politicians to fall in line when it comes to advancing their interests over the interests of everyday Americans. As a result, we get regulatory frameworks without teeth; healthcare laws that don’t actually control healthcare costs; endless Congressional investigations and hearings that provide excellent soundbites, but don’t go anywhere in terms of legislation and policymaking.

The hard truth for many to swallow is that making healthcare affordable means making it affordable for everyone, whether healthcare industry players like it or not. This means regulations and eligibility requirements that have teeth; it means making it more expensive for companies to fall out of compliance than to comply; it means revoking eligibility for federal programs, subsidies, and pricing agreements if providers are regularly non-compliant.

But this is not a conversation that many are willing to have, because in America, the Almighty Dollar is King. And so long as profits are high and shareholders are happy, we plebeians can go kick rocks!

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Green, E. L. (2025, December 02). Trump Calls Affordability a ‘Con Job’ as His Edge on the Economy Slips. New York, NY: The New York Times: US: Politics. https://www.nytimes.com/2025/12/02/us/politics/trump-affordability-economy-messaging.html

[2] Peter G. Peterson Foundation. (2026, August 11). Chart Pack: Healthcare. New York, NY: Peter G. Peterson Foundation. https://www.pgpf.org/article/chart-pack-healthcare/

[3] Rakshit, S., Winger, A., Cotter, L., McGough, M., Wager, E., & Cox, C. (2026, January 22). How has U.S. spending on healthcare changed over time? San Francisco, CA: Peterson-KFF Health System Tracker: Health Spending. https://www.healthsystemtracker.org/chart-collection/u-s-spending-healthcare-changed-time/

[4] Revell, E. (2025, December 02). Trump calls affordability 'a Democrat scam' as inflation concerns persist nationwide. New York, NY: Fox Business: Politics. https://www.foxbusiness.com/politics/trump-calls-affordability-a-democrat-scam-inflation-concerns-persist-nationwide

[5] Schumacher, S., Valdes, I., Mulugeta, M., Kearney, A., Kirzinger, A., & Hamel, L. (2026, October 06). KFF Health Tracking Poll: Health Care Issues in the Lead-Up to the 2026 Midterm Election. San Francisco, CA: KFF: Public Opinion. https://www.kff.org/public-opinion/kff-health-tracking-poll-health-care-issues-in-the-lead-up-to-the-2026-midterm-election/

[6] Wang, S. & Farrow, F. (2026, January 28). Bessent says Americans 'should be worried about affordability,' but blames Biden for cost issues. New York, NY: ABC News: Politics. https://abcnews.com/Politics/bessent-americans-worried-affordability-blames-biden-cost-issues/story?id=129636939

340B: The Glue That Should Hold Our Healthcare System Together

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

In June 2026, ADAP Advocacy released its latest policy paper—340B Program: The Glue That Should Hold Our Healthcare System Together—focusing on the explosive growth of the 340B Program from just 1,000 covered entities (CEs) and 503 contract pharmacies (CPs) in 1992 to over 53,000 CEs and 34,840 CPs in 2024. In addition to examining this growth and its causes, ADAP Advocacy also provided concrete recommendations to ensure the 340B Program can function in perpetuity (Macsata, et al., 2026). The policy paper is the latest in a series supporting the organization's argument that the 340B Program is too big to fail.

Source: ADAP Advocacy

ADAP Advocacy argues that, because the 340B Program spans more than 42,000 healthcare organizations and 32,000 pharmacies, it should be the glue that holds our healthcare system together. Instead, the 340B program has essentially become a slush fund for unscrupulous CEs—primarily hospitals—that lines executives’ pockets while cutting corners, costs, and services for both staff and patients. That’s not to suggest the program isn’t vitally important, or that there aren’t plenty of good actors…CEs…in the 340B space, because it is, and there are. The fact of the matter is a healthcare program of this size and magnitude cannot be entrusted to good faith alone; rather, improved transparency guardrails are needed to ensure its success and ultimately its intended beneficiaries: patients.

Primary Drivers of Growth:

ADAP Advocacy identified several key drivers of growth in the 340B program, including:

• The expansion of eligibility categories;
• The expansion of large health systems;
• The growing utilization by CEs of off-site clinics and child sites; and
• The explosive growth of Pharmacy Benefit Managers (PBMs) and contract pharmacies operating in the American healthcare space as third-party administrators for CEs

Policy Proposals

ADAP Advocacy also recommended several policy proposals to address the myriad issues facing the program, including:

• The implementation of a program-wide rebate model, in which drugs are purchased at full price up front, and rebates are provided by manufacturers at a later date;
• The consideration of a rebate “sales draw” under the program-wide rebate model that accounts for agencies with smaller annual operating revenues (e.g., those with less than $2 million);
• Mandatory reporting requirements for CEs, including how revenues have been used to improve patient care, reduce drug costs, or expand community services;
• Clearly defining “patient” in the statute—who qualifies as a patient, and which purchases qualify for 340B rebates; and
• Establishing an enforcement mechanism with real teeth and penalties ranging from civil monetary penalties to loss of 340B eligibility.

Each proposal is designed to ensure 340B revenues are used for patients in need, as intended by those who created the program. And these changes are long overdue.

Source: ADAP Advocacy | iStock

In 2025, 340B drugs exceeded $179.5 billion in list prices, with hospitals as the biggest cost driver (Martin et al, 2026). The 340B Program is immensely significant, and rising waste, fraud, and abuse pose an increasing risk. Because the American healthcare system is highly interdependent, a weakness in one sector can have widespread repercussions, making the 340B Program's impact especially important. 

Research published in September 2026 by the Pioneer Institute found that hospitals participating in the 340B Program spent an average of just 2.16% of their operating expenses on charity care, compared to 2.82% at non-340B hospitals. It also found that 340B hospitals spent just 1.6% of operating expenses on care for uninsured patients, compared with 2.26% at non-340B hospitals (Popovian et al., 2026).

Popovian et al. are quick to point out that their findings do not suggest that participating in the 340B Program “causes” hospitals to provide less charity care or care at cost; rather, their findings demonstrate that the 340B Program’s drug discounts, savings, and revenues do not reliably translate into providing more help for patients (either in terms of healthcare provision or lower costs), and that current reporting requirements are insufficient to ensure that 340B revenues are being appropriately utilized in ways that comport with either the letter or intent of the statute.

Source: Pioneer Health

Last month, ADAP Advocacy launched a national advocacy campaign focused on the data and findings of its most recent 340B white paper, including infographics, social media posts, op-eds, and video content. The campaign is patient-centric in that it informs patients, regardless of their chronic health condition or rare disease, why they can no longer sit on the sidelines and watch the pharmaceutical industry and big hospital systems duke it out over what is in our best interest. Nothing about us, without us!

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Macsata, B. M., Anthony, G., Hopkins, M. J., Sosa, J. (2026, June). 340B Program: The Glue That Should Hold Our Healthcare System Together. Nags Head, NC: ADAP Advocacy: Policy Center: 340B: Policy Papers. https://www.adapadvocacy.org/s/2026_ADAP_Project_RW_340B_Asset_32_340B_Glue_Should_Hold_Healthcare_Together_061526.pdf

[2] Martin, R., Karne, H., Zen, S. (2026, June), The Size and Growth of the 340B Program in 2025. IQVIA. https://www.iqvia.com/-/media/iqvia/pdfs/us/white-paper/2026/iqvia-size--growth-of-340b-in-2025-white-paper-2026.pdf

[3] Popovian, R., Sydor, A. M., Czubaruk, K., Walker, M., & Smith, W. (2026, September 24). The 340B Accountability Gap: Charity Care, Uncompensated Care, and Medicaid Patient Volume Among 340B and Non-340B Hospitals: What the Data Mean for 340B Accountability and Reform. Boston, MA: The Pioneer Institute: Pioneer Health. https://pioneerinstitute.org/wp-content/uploads/2026/09/2026-09-08-Cancer-Care-340B-Paper.pdf

CDC Releases New Information About People Living With HIV/AIDS

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

The Centers for Disease Control and Prevention (CDC) released its latest update to the Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection in September 2026. These data represent findings from people living with HIV/AIDS (PLWHA) collected in 2024, and could point to significant trouble ahead for PLWHA (CDC, 2026).

Source: CDC

Key Findings and Discussion:

While 80% of respondents were prescribed antiretroviral therapy (ART) to treat their HIV, only 63% reported taking every dose as prescribed. Among those who missed doses, 22.7% missed doses for 1 to 2 days, 10.2% for 3 to 5 days, 1.5% for 6 to 10 days, and 2.3% for 11 or more days. The most commonly reported reasons for not taking medications included:

• Forgetting to take them (69.1%)
• Changes in daily routines or travel (42.3%)
• Falling asleep early or oversleeping (38.4%)
• Feeling depressed or overwhelmed (21%)
• Problems getting prescriptions or refilling medications (18.5%)
• The person didn’t feel like taking them (14.1%)
• Alcohol or drug use (10.3%)
• Problems paying for medications (6.9%)
• In the hospital or too sick to take medications (6.6%)
• Difficulties with medication side effects (5.8%)

When disaggregated by sex, Female respondents were slightly more likely to be adherent to treatment (66.2%), while 62.5% of Males reported being adherent.

When disaggregated by race, Multiracial Americans were the least likely to be treatment adherent (59.5%), followed by Black Americans (62%), Hispanic/Latine Americans (63.1%), and White Americans (65.6%). Asian Americans had the highest rate of treatment adherence, at 70.6%.

When disaggregated by age, adults aged 50+ were most likely to be treatment adherent (69.9%), followed by those aged 40-49 (58.3%) and those aged 18-29 (53.6%). Adults aged 30-39 were the least adherent, at 50.6%.

These data are particularly problematic, as failure to adhere to treatment regimens can result in the mutation of the virus to become resistant to specific ARTs or drug classes, making HIV harder to treat and limiting future treatment options. Additionally, nonadherence to ART regimens can leave the virus unsuppressed, increasing the likelihood of transmitting it to others (HIV dot Gov, 2026).

Source: Marley Drug

How to Improve Treatment Adherence

The HIV treatment landscape has changed significantly over the past twenty years. While treating HIV once required patients to take and keep track of multiple pills a day (or daily injections), single-pill oral regimens became the norm in the 2010s, and now, we have long-acting injectable (LAI) medications that can be delivered monthly or every other month.

A recent study published in The New England Journal of Medicine found that patients treated with LAIs were significantly less likely to experience regimen failure (n = 29; 19%) than patients taking a standard oral regimen (n = 55; 36%). While most regimen failures in the standard group resulted from virologic failure (58.2%), treatment discontinuation or abandonment caused regimen failure in the LAI group (82.6%). At the 48-week mark, regimen failure was 22.8% in the LAI group and 41.2% in the standard oral regimen group, indicating that LAIs are a key component to improve treatment adherence and virologic suppression (Rana et al., 2026)

ADAP Advocacy’s own research found that 52.3% of patients who responded to a 2024 survey would prefer LAI treatment regimens over oral regimens (Johnson et al., 2024).

Source: ADAP Advocacy

Quality of Life and HIV

Additional findings of the MMP found that structural challenges continue to negatively impact PLWHA, with respondents reporting hunger or food insecurity (22%), unstable housing or homelessness (20%), and unemployment (15%) as being primary drivers of poor physical, mental, and emotional health. Moreover, many PLWHA reported unmet needs for ancillary services that could improve living conditions and well-being, including access to dental care (24%), meal or food service assistance (15%), and stable sheltering or housing services (15%).

Trouble Ahead

The real concern in these data is not the data themselves, but that they were gathered before the Trump Administration took wrecking balls to nearly every aspect of public health provision and services. With state ADAP programs facing increasing budgetary shortfalls that could result in constriction of state programs (Hopkins, 2026), the forthcoming Medicaid implosion that the Trump Administration and its allies in Congress forced through in the One Big Beautiful Bill Act (Hopkins, 2025), and exploding costs of living related to the ongoing war against Iran and nonsensical tariffs, including skyrocketing costs of fuel, diesel, food, goods, and services (Wile & Murphy, 2026; Zahn, 2026), PLWHA are going to be squeezed more than ever. The reality is that patients living with HIV are going to be significantly worse off financially and are likely to face significantly higher barriers to accessing not only HIV care and treatment, but basic necessities, like food, shelter, and transportation.

While we should have been preparing for this for a while, many of us were caught flat-footed by the wholesale destruction being wrought by the Trump Administration. Hopefully, we will be able to course correct enough to avoid the majority of the devastation many are predicting.

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Centers for Disease Control and Prevention. (2026, September 10). Behavioral and Clinical Characteristics of Persons with Diagnosed HIV Infection. Atlanta, GA: United States Department of Health and Human Services: Centers for Disease Control and Prevention: National Center for HIV, Viral Hepatitis, STD, and Tuberculosis Prevention: Division of HIV Prevention: HIV Data: Medical Monitoring Project. https://www.cdc.gov/hiv-data/mmp/behavioral-clinical-characteristics-pwh.html

[2] HIV dot Gov. (2026, September 24). Guidelines for the Use of Antiretroviral Agents in Adults and Adolescents With HIV. Rockville, MD: United States Department of Health and Human Services: Office of Infectious Disease and HIV/AIDS Policy: HIV dot Gov: Clinical Info: Guidelines. https://clinicalinfo.hiv.gov/en/guidelines/hiv-clinical-guidelines-adult-and-adolescent-arv/interruption-antiretroviral-therapy

[3] Hopkins, M. J. (2025, July 30). Preparing for One Big Beautiful Disaster. Washington, DC: PlusInc: Blog. https://www.plusinc.org/blog/one-big-beautiful-disaster

[4] Hopkins, M. J. (2026, September 24). ADAP: A House of Cards Waiting to Fall. Nags Head, NC: ADAP Advocacy: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2026/09/a-house-of-cards-waiting-to-fall.html

[5] Johnson, R. D., Hopkins, M. J., Laws, J., & Macsata, B. M. (2024). HIV Long-Acting Injectables: Patient access considerations for injectable HIV therapies and injectable HIV Pre-Exposure Prophylaxis. Nags Head, NC: ADAP Advocacy. https://www.adapadvocacy.org/s/2024_ADAP_Project_Long_Acting_Injectables_Final_Report_062524-wgxy.pdf

[6] Rana, A. I., Zheng, L., Castillo-Mancilla, J., Bao, Y., Sieczkarski, S., Brooks, K. M., Lake, J. E., Fichtenbaum, C., Heath, S. L., Belaunzaran-Zamudio, P. F., Klingman, K., Fox, L., Morton, T., Stirratt, M., Li, J. Z., Acosta, E. P., Venuto, C., Galárraga, O., Shoptaw, S., Wohl, D., … ACTG A5359 LATITUDE Trial Team. (2026). Cabotegravir plus Rilpivirine for Persons with HIV and Adherence Challenges. The New England journal of medicine, 394(9), 858–871. https://doi.org/10.1056/NEJMoa2508228

[7] Wile, R. & Murphy, J. (2026, September 23). The U.S. economy before and after the Iran war, in five charts. New York, NY: NBC News: Business: Economy. https://www.nbcnews.com/business/economy/us-economy-iran-war-five-charts-rcna598412

[8] Zahn, M. (2026, August 25). Tariffs will cost US households over $1,000 a year, Yale Budget Lab says. Burbank, CA: ABC: ABC News: Business. https://abcnews.com/Business/tariffs-cost-us-households-1000-year-yale-budget/story?id=135945432

ADAP: A House of Cards Waiting to Fall

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

Did you know that Federal funding for the AIDS Drug Assistance Program (ADAP) accounted for just 29% of the 2024 national ADAP budget? Did you know that Congress has not appropriated any new money for the ADAP budget in over a decade?

It’s true!

Source: KFF

According to the National Alliance of State and Territorial AIDS Directors (NASTAD), federal appropriations for ADAP account for a vanishingly small percentage of the national ADAP budget (NASTAD, 2026).

Since the establishment of the Ryan White HIV/AIDS Program in 1990, Congress has appropriated funds specifically to address the provision of medications to treat HIV/AIDS for patients who might otherwise be unable to afford them. But the spending power of those federal dollars has fallen significantly over the past twenty years.

In Fiscal Year 2004, federal appropriations accounted for 61%, state-level funding for 19%, and drug rebates for 12%.

Fast forward to 2024—the most recent year for which data are available—and that funding model is fundamentally different:

In FY2024, drug rebates accounted for 52%, federal funding for 29%, and state-level funding for just 4%.

According to a presentation delivered by NASTAD’s Tim Horn at ADAP Advocacy’s recent Health Fireside Chat in Pittsburgh, Pennsylvania, federal funding for the AIDS Drug Assistance Program has been stalled at ~$900 million annually for a program that costs $2.7 billion (Macsata & Hopkins, 2026).

And now, yet another crisis has landed itself in ADAP's proverbial lap. After 13 years, people living with HIV/AIDS in two states are once again being denied access to care and treatment because ADAP is running out of money. According to NASTAD’s ADAP Watch, Iowa and Utah have ADAP waiting lists.

Source: NASTAD

How did we get here?

Put plainly, ADAP has been largely forgotten by federal and state legislators, in much the same way that many people seem to have forgotten that HIV/AIDS still exists. Unless someone is in front of them banging the drum that people are still being diagnosed and living with HIV/AIDS, it’s out of sight, out of mind.

In many ways, the reluctance of HIV advocacy organizations to actively and vocally push for increases to the ADAP earmark comes from a place of fear: fear that, by reminding legislators that HIV/AIDS exists, it places HIV funding at risk of further funding cuts.

And that fear isn’t without merit; since resuming office in January 2025, Donald Trump’s administration has actively worked to dismantle and defund HIV services at home and abroad.

In 2025, the Trump Administration:

• Issued a stop-work order that froze all programming and services for the President’s Emergency Plan for AIDS Relief (PEPFAR), which halted all work in the field, including the provision of antiretroviral therapy (ART);
• Issued a limited waiver for PEPFAR that allowed only ‘life-saving HIV services,” which excluded most HIV prevention services;
• Dissolved the USAID program that administered the PEPFAR program;
• Canceled funding for hundreds of programs that included HIV activities (KFF, 2026)

Source: STAT | Getty Images

Beyond pulling the rug out from under PEPFAR, the Trump Administration has gone further by announcing it will not renew $46 million in funding for Community-Based Organizations (CBOs) to provide HIV testing, linkage to care, referrals to pre- and post-exposure drug treatment, and outbreak response (Cohen, 2026). Instead, those funds will be redirected to state and local health departments—an effort to control how the funds are used and who they reach, avoiding funding for “Diversity, Equity, and Inclusion.”

The President’s 2027 budget also proposed eliminating $800 million from the Centers for Disease Control and Prevention’s HIV prevention funding (Cohen, 2026). Additionally, it proposed the elimination of the Housing Opportunities for People with AIDS (HOPWA) program—which serves over 100,000 households annually (Bennett & Hannon, n.d.).

In context, those cuts, whether they’re actual or proposed, paint an even bleaker picture of the state of ADAPs at the federal level. Even though more clients are enrolling and healthcare costs are climbing, federal funding for ADAPs hasn't really grown over the past decade. This means ADAPs have the same purchasing power as they did in 1999, once inflation is accounted for. HIV advocacy needs to remind Congress of the inherent value of this program.

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Bennett, R. & Hannon, B. (n.d.) Housing Opportunities for Persons with AIDS (HOPWA). National Low Income Housing Coalition. https://nlihc.org/sites/default/files/AG-2025/4-135_Housing-Opportunities-for-Persons-with-Aids-HOPWA.pdf

[2] Cohen, A. (2026, July 20). Trump administration puts kibosh on HIV prevention funding. Washington, DC: Roll Call: Policy. https://rollcall.com/2026/07/20/trump-administration-puts-kibosh-on-hiv-prevention-funding/

[3] KFF. (2026, August 06). The Trump Administration’s Foreign Aid Review: Status of PEPFAR. San Francisco, CA: KFF: Global Health Policy. https://www.kff.org/global-health-policy/the-trump-administrations-foreign-aid-review-status-of-pepfar/

[4] Macsata, B. M. & Hopkins, M. J. (2026, August 20). Fireside Chat Retreat in Pittsburgh, PA Tackles Emerging Crisis Facing AIDS Drug Assistance Programs. Washington, DC: ADAP Advocacy: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2026/08/fireside-chat-retreat-in-pittsburgh-pa.html

[5] National Alliance of State and Territorial AIDS Directors. (2026a). 2026 National Ryan White HIV/AIDS Program Part B ADAP Monitoring Project Annual Report: Stabilizing the Safety Net: Stewardship and Outcomes in a Volatile Landscape. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/2026-rwhap-part-b-adap-monitoring-report

Goliath vs. Goliath—How the 340B Devil’s Bargain Might Self-Destruct

By: Marcus J. Hopkins, Health Policy Lead Consultant, ADAP Advocacy

Mount Sinai Health Systems (New York, NY), the University of Kansas Hospital Authority (Kansas City, KS), and the University of Michigan Hospitals and Health Centers (Ann Arbor, MI) are suing CVS Health for failing to properly reimburse them for drugs purchased and dispensed under the massive 340B Drug Pricing Program, claiming under-reimbursement to the tune of nearly $250 million over a period of five years (Hut, 2026).

Source: Forbes | Getty

The suits, filed in three separate courts, argue that CVS, which serves as a contract pharmacy for all three health systems, accuses CVS Health and its subsidiaries of retaining illegally large shares of 340B revenues generated and failing to remit them to the covered entities that generated the sales. The plaintiffs are seeking triple damages under the federal Racketeer Influenced and Corrupt Organizations (RICO) Act and seek injunctions enjoining CVS from continuing the business practices in question (Halleman, 2026).

In addition to the three initial suits, Henry Ford Health (Detroit, MI) sued CVS on July 16, alleging 340B revenue diversions amounting to more than $29 million, requesting the courts force CVS to disgorge any profits retained from the alleged diversion scheme and reinstate the pharmacy services CVS terminated with the health system in April—a termination that Henry Ford argues was in retaliation for its attempt to audit their arrangement with CVS (Jeffries, 2026a).

Source: Henry Ford Health

And then, a fifth hospital, Froedtert Memorial Lutheran Hospital (Milwaukee, WI), sued CVS Health on August 20th, alleging diversions amounting to $18 million between 2020 and 2025. When Froedtert attempted to audit CVS on March 2nd, 2026, CVS refused the request and terminated the hospital’s pharmacy services. This suit alleges breach of contract, fraud, violations of the Wisconsin Deceptive Trade Practice Act, and civil RICO violations, and it also seeks triple damages, reinstatement of the pharmacy services agreement, and disgorgement of profits derived from the scheme (Jeffries, 2026b).

CVS Health has been in the spotlight in 2026, after a particularly damaging congressional hearing in which Representative Alexandria Ocasio-Cortez (D-NY-14) all but accused CVS Health CEO David Joyner of operating an illegal monopoly.

During the January 22nd, 2026, hearing, Ocasio-Cortez highlighted what former CVS Health CEO Karen Lynch referred to as its “captive strategy,” in which CVS provides services to patients through its health insurance company, Aetna, and its primary care clinic, Oak Street Health, fills prescriptions through CVS, operates a Pharmacy Benefit Manager (PBM), CVS Caremark, and develops biosimilar medications through its Dublin, Ireland-based drug manufacturer, Cordavis (Hopkins, 2026).

Source: Rep. Alexandria Ocasio-Cortez

In response, CEO David Joyner stated, “No, I wouldn't agree that it's market concentration. I would suggest it's a model that works really well for the consumer.”

These suits against CVS Health bring to the fore one of the primary complaints against PBMs and contract pharmacy arrangements: if CVS (or any contract pharmacy or PBM) is surreptitiously or illegally hoarding 340B revenues, those are funds not being used to benefit patients. Maybe an amicus brief might be in order here?

To be certain, ADAP Advocacy has consistently called out many hospital systems for failing to properly use 340B revenues to benefit patients. In this case, five large health systems are going up against an equally large, and arguably more publicly bruised, company.

And we’re anxiously awaiting the outcomes...

Disclaimer: All funders of the ADAP Advocacy Association are publicly listed on our website. 

Disclaimer: Guest blogs do not necessarily reflect the views of the ADAP Advocacy Association; rather, they provide a neutral platform for the author to promote open, honest discussion of public health-related issues and updates.

References:

[1] Halleman, S. (2026, May 22). Hospitals sue CVS for allegedly siphoning $250M in 340B funds. Newton, MA: Healthcare Dive. News. https://www.healthcaredive.com/news/hospitals-file-340b-lawsuit-cvs-health/820959/

[2] Hopkins, M. J. (2026, January 29). Congress Shines Spotlight on Health Insurance Companies' Squeeze on Patients. Washington, DC: ADAP Advocacy: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2026/01/congress-shines-spotlight-on-health.html

[3] Hut, N. (2026, May 27). 340B lawsuits against CVS allege $250M in underpaid hospital reimbursement. Downers Grove, IL: Healthcare Financial Management Association. https://www.hfma.org/payment-reimbursement-and-managed-care/cvs-340b-lawsuits-hospital-reimbursement/

[4] Jeffires, E. (2026a, July 22). Henry Ford Health sues CVS, alleges 340B pricing scheme. Chicago, IL: Becker’s Hospital Review: Legal & Regulatory Issues. https://www.beckershospitalreview.com/legal-regulatory-issues/henry-ford-health-sues-cvs-alleges-340b-pricing-scheme/

[5] Jeffries, E. (2026b, August 31). Milwaukee hospital sues CVS over $18M in alleged 340B diversion. Chicago, IL: Becker’s Hospital Review: Legal & Regulatory Issues. https://www.beckershospitalreview.com/pharmacy/milwaukee-hospital-sues-cvs-over-18m-in-alleged-340b-diversion/