Ryan White Programmatic Funding Balances on a Precarious Precipice

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

When then becomes now. In 2013, a large group of HIV advocates, activists, care providers, community organizations, pharmaceutical companies, and patients living with HIV/AIDS (PLWHA) gathered in Washington, DC, to address what they saw as a crisis: that the Ryan White Cares Act would be reopened and gutted by the then-Republican-majority.

Photo Source: ADAP Advocacy

Those fears never came to pass, in no small part because of a mutual agreement to simply not mention that the act needed to be reauthorized because there was no sunset provision—a provision that automatically repeals or terminates a law—and just pray that it would be forgotten. Disagreements aside, stakeholders agreed that with no clear path ahead, the best strategy was “keeping our heads down and pray no one notices us,” as the late Bill Arnold summarized.

It’s now 2026, and once again, the specter of a collapse is once again upon us. This time, political inaction, combined with accusations of purported malfeasance, appears to be the culprit. What previously worked is no longer a viable option, since HIV-related services have been in the crosshairs since Elon Musk started gutting much of the safety-net under the guise of government “efficiency,” regardless of the harm being caused to patients, families, neighborhoods, and communities.

State AIDS Drug Assistance Programs (ADAPs) across the U.S. are facing unprecedented budgetary shortfalls, with multiple states opting to implement “cost containment” measures, including (but not limited to) cutting income eligibility levels, requiring in-person recertification, cutting formulary coverage, and introducing per-patient expenditure caps, in an effort to keep their programs open for as many people as possible (Hopkins, 2026). The HIV community has been in similar predicaments, such as the “ADAP Crisis” that impacted over 10,000 patients between 2010-2012, but something about this crisis just feels different.

Why?

Because the number of PLWHA continues to increase, while federal funding remains flat and state-level funding decreases. And they’re living longer

According to the most recent report from the National Alliance for State and Territorial AIDS Directors, an average of 52% of all state ADAP budgets is derived from pharmaceutical and manufacturer rebates (NASTAD, 2026). This is a significant change from 2008, when federal funding accounted for 51%, state funding for 21%, and rebates for 21% (Figure 1).

Figure 1 - Total ADAP Budget, By Source, FY1996–FY2024

Photo Source: NASTAD, 2026

Meanwhile, state funding has decreased to just 4% across the country, while the federal funding has remained relatively flat for a decade. For many programs, this has the potential to spell doom, as baseline budgets make using a rebate model—where programs pay the list price of medications upfront and are reimbursed the difference between the list price and the 340B Drug Pricing Program purchase price—a precarious endeavor. If the funds aren’t available to front-load those purchases, how will the programs do so and continue to provide services?

The answer is increasingly looking to be, “They can’t.”

In addition to being hit hard by funding shortages, ADAP programs, which have been authorized to pay for enrollees’ commercial insurance premiums, deductibles, and co-pays rather than using a full-pay medication model, have been struggling to keep up with the exponential annual increases in insurance costs foisted upon patients as yet another result of political inaction and malfeasance.

Since 2014, the average premium for an Affordable Care Act (ACA) Marketplace benchmark plan has risen from $273/month to $625/month in 2026 (Figure 2).

Figure 2 - Marketplace Average Monthly Benchmark Premiums, 2014-2026

Photo Source: KFF, 2026

These marketplace benchmark trends coincide with the aforementioned flat federal funding, decreasing state funding, and increased ADAP enrollment following the winddown of the expanded Medicaid access allowed during the COVID-19 pandemic, which led to a roughly 30% increase in enrollment from Calendar Year 2022 (CY2022) to CY2024 (NASTAD, 2026).

Essentially, as premiums become increasingly unaffordable, enrollees who had previously relied on Ryan White and ADAP for co-pay assistance while paying their own premiums have, due to rising costs, been forced to turn to ADAP for assistance with premiums, deductibles, and co-pays.

What Does This Portend?

None of these circumstances on their own would be ideal, but in combination, ADAPs are, for the first time in over 12 years, considering implementing waitlists for services.

For those who don’t remember, ADAPs once resorted to leaving patients in need of treatment on state waitlists to gain access to funding. Essentially, the only way to get access was for someone to become ineligible or die. Over 10,000 PLWHA languished on waiting lists in 13 states, and several of them died; the community pleaded for help.

The threat of these once again becoming a reality has prompted concerns about the collapse of the program altogether, with a recently released analysis projecting over 117,000 new HIV diagnoses over 5 years if the program ends, and an additional 68,000+ diagnoses if the program is interrupted for 2.5 years (Haelle, 2026). No clearer example exists than what is happening in Florida.

A recent analysis present at the Conference on Retroviruses and Opportunistic Infections (CROI) found that, should the Ryan White HIV/AIDS Program collapse, the projected number of new HIV diagnoses is likely to increased by 73% in 30 states, with the hardest hit states being Colorado, South Carolina, Missouri, Tennessee, Kentucky, Alabama, Illinois, and Wisconsin (Schnure et al., 2026).

What Can Be Done?

At this point, most state legislative sessions have ended or are winding down, essentially making the prospect of securing state-level funding an unlikely avenue. Additionally, given the Trump Administration and the current composition of Congress, there is little evidence that positive momentum can be built to secure additional federal funding.

NASTAD is pushing for a $175 million increase in the federal appropriation to address the shortfalls. NASTAD's recent policy brief reads: "Of the $175 million increase, $75 million should be allocated through the ADAP base funding awards, and $100 million should be added to the ADAP Emergency Relief Funding, bringing those awards to a total of $175 million."

In the meantime, policy experts, advocates, and activists are working behind the scenes to mitigate the current and impending funding disasters. ADAP Advocacy will continue to monitor and report on circumstances as they develop.

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] Dawson, L. & Kates, J. (2026, March 02). Constrained Budgets Lead States to Restrict HIV Drug Access Through Ryan White. Washington, DC: KFF: HIV/AIDS. https://www.kff.org/hiv-aids/constrained-budgets-lead-states-to-restrict-hiv-drug-access-through-ryan-white/

[2] Haelle, T. (2026, February 27). Study Warns of Large Increase in New HIV Cases in U.S. if Ryan White Program Ends: Colorado and several Southern and Midwest states would see the biggest increases in incidence. New York, NY: MedPage Today: Meeting Coverage: CROI. https://www.medpagetoday.com/meetingcoverage/croi/120084

[3] Hopkins, M. J. (2026, March 12). NASTAD Releases 2026 ADAP Monitoring Report: Warning Signs Ahead. Nags Head, NC: ADAP Advocacy: Blog. https://adapadvocacyassociation.blogspot.com/2026/03/nastad-releases-2026-adap-monitoring.html

[4] KFF. (2026). Marketplace Average Monthly Benchmark Premiums. Washington, DC: KFF: State Health Facts: Affordable Care Act: Health Insurance Marketplaces. https://www.kff.org/affordable-care-act/state-indicator/marketplace-average-benchmark-premiums/?activeTab=graph&currentTimeframe=0&startTimeframe=12&selectedRows=%7B%22wrapups%22:%7B%22united-states%22:%7B%7D%7D%7D&sortModel=%7B%22colId%22:%22Location%22,%22sort%22:%22asc%22%7D

[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

[6] National Alliance of State and Territorial AIDS Directors. (2026, February 27). ADAP Fiscal Year 2027 Funding Request. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/resources/adap-fiscal-year-2027-funding-request

[7] Schnure, M., Forster, R., Jones, J. L., Lesko, C. R., Batey, D. S., Butler, I., Ward, D., Musgrove, K., Althoff, K. N., Jain, M. K., Gebo, K. A., Dowdy, D. W., Shah, M., Kasaie, P., & Fojo, A. T. (2026). HIV Incidence Could Rise by 73% in 30 States if Ryan White Ends: A Simulation Study, Abstract [Conference abstract]. 2026 Conference on Retroviruses and Opportunistic Infections, Denver, Colorado, United States. https://www.natap.org/2026/CROI/croi_100.htm

The Shrinking Number of Infectious Disease Doctors

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

Imagine having to travel 60 miles or more to reach an infectious disease (ID) physician who has the requisite expertise and training to address your HIV/AIDS. For many people living in nearly 80% of counties in the United States (n = 2,499), this is a reality (Figure 1; Walensky et al., 2020).

Figure 1 – ID Physician Density per 100,000 Population, by County

Photo Source: Walensky et al., 2020

This shortage of ID physicians isn’t new; for nearly a decade, the Infectious Diseases Society of America (IDSA) has been attempting to recruit aspiring or existing physicians into the field (Thompson, 2022), but those efforts have largely fallen flat.

In 2008, there were 6,424 physicians in the U.S. with active ID licenses; by 2018, that number was 9,136 (a 42% increase over 10 years); by 2025, however, it was just 9,774—barely a 7% increase over 7 years (Bearman et al., 2025).

So…what’s driving this shortage?

As with most things American Healthcare System-related, much of the issue has to do with money. Infectious disease doctors are historically paid less than physicians in other specialties, such as cardiology and gastroenterology (Goldman, 2026). According to the IDSA:

• The average medical student carries more than $241,000 in educational debt
• ID physicians make on average $260,000/year compared to those working in plastic surgery ($575,000/year), orthopedics ($557,000/year), cardiology ($490,000/year). According to the IDSA, of the fields measures, ID was the fifth-lowest paid specialty out of 29 fields examined (Figure 2, IDSA, 2022)

Figure 2 - Physician Compensation for Infectious Diseases Specialists Lower than Most Specialists

Photo Source: IDSA, 2022

In addition to financial issues, other issues exist that make placing ID physicians in unserved or underserved counties.

Rural counties are simply unable to attract and retain talent.

One of the primary issues that exists across the economy is the fact that rural areas simply lack much of what educated professionals want:

1. Available affordable housing
2. High-quality infrastructure, including safe, well-maintained roads, reliable utilities, including heating, electricity, and mobile phone coverage, and close, reliable emergency services, including law enforcement, fire departments, and other emergency personnel
3. Good schools that can provide any existing or potential children with a quality educational experience
4. Strong, inclusive communities that are welcoming to and accepting of non-White, non-Christian professionals
5. Close proximity to entertainment and dining opportunities
6. Close proximity to healthcare services other than those provided by the physicians themselves

The reality for many people who move to rural areas is that the touted “benefits” of living in rural communities, including more physical space, lower costs of living, a slower pace of living, and “fresh air,” as the Green Acres theme song reminded us, are simply outweighed by the inconveniences of rural life.

For patients in these unserved and underserved counties, however, they don’t really care why ID physicians aren’t located near them; they only care that they aren’t.

Photo Source: PlusInc | iStock

If you were to explain to patients with chronic illnesses that it’s hard to fill a position that pays “just” $260,000/year, you would likely be met with disbelief and scorn. When nearly 40% of people living in rural areas have median incomes of less than $50,000/year, trying to sell them the line that “ID physicians just don’t make enough” is a very hard sell (Federal Housing Finance Agency, 2024).

For many people dedicated to rural living, it’s hard to understand why people would want to live anywhere else. And this is part of the problem: if your area offers little in the way of modern comforts, job security, and job growth potential, it’s no big surprise that people who live there want to leave, and those who don’t live there want to avoid it.

And while 65% of nonmetro counties have seen population growth since 2020, almost all of that growth has come not from domestic relocation, but from international/foreign migration (United States Department of Agriculture, 2026).

All of these issues combined make for a bleak picture.

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] Bearman, G., Mullin, R., & Nori, P. (2025, December 10). The Receding Specialty of Infectious Diseases and Implications for U.S. Healthcare. Open Forum Infectious Diseases, 12(12), ofaf756. https://doi.org/10.1093/ofid/ofaf756

[2] Federal Housing Financing Agency. (2024, December 23). Who Lives in Rural America? Washington, DC: Federal Housing Financing Agency: Blog: Insights. https://www.fhfa.gov/blog/insights/who-lives-in-rural-america

[3] Goldman, M. (2025, March 02). Why new doctors aren't specializing in infectious diseases. Arlington, VA: Axios. https://www.axios.com/2026/03/02/doctors-not-specializing-infectious-diseases

[4] Maamari, J., Chen, Z., Motairek, I., Al-Kindi, S., & Fleisher, J. (2024, April 18). Mapping Proximity to Infectious Disease Physicians Across the United States. Open Forum Infectious Diseases, 11(5), ofae208. https://doi.org/10.1093/ofid/ofae208

[5] Sajani, A. (2024, August 05). The infectious disease doctor shortage will hit marginalized people the hardest. Boston, MA: STAT. https://www.statnews.com/2024/08/05/infectious-disease-doctor-shortage-bio-preparedness-workforce-pilot-program/

[6] Thompson, D. (2022, December 19). America Facing Shortage of Infectious Disease Doctors. Norwalk, CT: HealthDay: Health News: Public Health. https://www.healthday.com/health-news/public-health/physicians-2658968654.html

[7] United States Department of Agriculture. (2026, February 13). Population & Migration. Washington, DC: United States Department of Agriculture: Economic Research Service: Rural Economy Population. https://www.ers.usda.gov/topics/rural-economy-population/population-migration

[8] Walensky, R. P., McQuillen, D. P., Shahbazi, S., & Goodson, J. D. (2020, June 03). Where Is the ID in COVID-19? Annals of Internal Medicine, 173(7), 587-589. https://doi.org/10.7326/M20-2684

NASTAD Releases 2026 ADAP Monitoring Report: Warning Signs Ahead

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

The National Alliance of State and Territorial AIDS Directors (NASTAD) has released its annual National Ryan White HIV/AIDS Program (RWHAP) Part B ADAP Monitoring Report. Highlights from the report indicate that, while the program is achieving the goal of helping ADAP recipients suppress their HIV, the failure of governments to adequately fund state programs and those programs’ increasing reliance on drug rebates imperils the lives of those recipients (NASTAD, 2026a).

Photo Source: NASTAD

The 2026 ADAP Monitoring Report includes findings from Fiscal Year 2024 (FY2024) and Calendar Year 2024 (CY2024) and relies on state and territorial ADAPs to respond to NASTAD’s inquiries about their programs to ensure that the information provided therein is as accurate as possible. That said, 2 U.S. states (Mississippi and West Virginia) and 7 territories (American Samoa, the Federated States of Micronesia, Guam, Marshall Islands, the Northern Mariana Islands, the Republic of Palau, and the U.S.).S. Virgin Islands) failed to respond to these inquiries.

What’s Working Well

Viral Suppression

87% of ADAP recipients in FY/CY2024 achieved viral suppression. This is a considerable improvement over the 74% suppression rate in FY/CY2024 and much better than the national suppression rate of 67%.

HIV suppression rates in the United States have consistently lagged behind those of economically comparable nations (Figure 1). Compared to similar nations, the U.S. HIV viral suppression rate tends to fluctuate between 57% and 67%, while other nations range from 72% (Canada) to 92% (United Kingdom). Persons Living with HIV/AIDS (PLWHA) who are enrolled in ADAP have achieved viral suppression rates that allow the U.S. to “compete” with other nations.

The primary difference between the U.S. and other nations is that those nations provide universal healthcare coverage, allowing patients to rest assured that their HIV medications will be covered. Comparatively, PLWHA in the United States must contend with significant barriers to accessing HIV care and treatment due to our nation’s reliance on a for-profit healthcare system that prioritizes profits over health outcomes. The ADAP program has allowed patients similar surety that they will have access to the medications they need to live healthy, productive lives

Figure 1 - HIV Viral Suppression Rate in the U.S. Lowest Among Comparable High-Income Countries

Photo Source: KFF

Whom ADAP Served in FY/CY2024

In CY2024, ADAPs served 257,644 individual clients across 49 reporting jurisdictions, acting as the primary access point for nearly one-quarter (23%) of the 1.13 million people aged 13 years or older living with diagnosed HIV in the United States at the end of 2023.

This represents a 7.5% increase over CY2019 levels, and NASTAD notes that this increase underscores patients’ growing reliance on the program despite the full implementation of the Affordable Care Act (ACA).

In FY/CY2024, 40% of all ADAP program clients earned 100% or less of the Federal Poverty Level (FPL), and 65% earned 200% or less.

Additionally, nearly half of all ADAP clients (43%) are People of Color (POC), with 38% Black, slightly lower than the 40% who were Black in CY2019. 36% of ADAP clients identify as Hispanic/Latine, a significant increase from 28% in CY2019.

Finally, the majority of ADAP clients (55%) were aged 45 or older, with the proportion of clients aged 65 or older increasing from 9% in CY2019 to 14% in CY2024.

NASTAD notes that the continued “greying” of ADAP enrollees will necessitate “…robust coordination between ADAPs and Medicare to ensure seamless coverage for the aging caseload.”

How ADAP Clients Are Served

Because the AIDS Drug Assistance Program is federally funded but state-administered, each state is allowed to determine how it serves ADAP clients. The traditional ADAP program provides full-pay medication coverage for clients, on which 47% rely.

Since the passage of the Affordable Care Act (ACA), however, the Health Resources Services Administration (HRSA) has allowed state ADAPs to use funds to purchase commercial health insurance coverage for ADAP clients and to reimburse those with employer-sponsored insurance coverage. 41% of clients across the United States rely on the ADAP program for said coverage.

Additionally, 12% of clients rely on a combination of full-pay and insurance support to address critical coverage gaps between drug formularies.

Trouble on the Horizon

In addition to the positive impacts ADAPs have had on clients, significant issues loom over state and territorial programs that threaten their solvency and continued effectiveness.

Rising Costs

The most pressing concerns faced by state ADAPs is that healthcare costs have risen exponentially and are likely to continue rising as a result of both Congressional inaction to increase federal funding for RWHAP and the deliberate refusal of Congressional Republicans to extend the enhance premium tax credits implemented by the American Rescue Plan Act of 2021 (ARPA) and extended by the Inflation Reduction Act of 2022 (IRA).

These tax credits were implemented to lower ACA Marketplace premiums for all patients, and Congress’s refusal to extend them resulted in a 21.7% increase in Marketplace premiums for benchmark second-lowest-cost Silver plans and 6%- 7% increases in employer-sponsored insurance premiums (Holahan, O’Brien, & Kennedy, 2025).

These premium increases highlight what many advocates have argued since the passage of the ACA: The ACA was never likely to control insurance costs because no limits were placed on annual premium price increases.

The primary failure of the American healthcare system is its convoluted, fragmented nature, full of special-interest-driven loopholes. The current “market” theory relies not on patients who need care, but rather on what insurers and government payors are willing to pay.

For-profit entities do not, in fact, care whether or not patients can afford the care they need; that’s not their purpose. Their purpose is to generate profits for their companies and their shareholders.

This results in a system where patients have to forego care and potentially die in the richest nation on the planet.

For ADAPs, these increased premiums pose significant threats to annual budgets, which increasingly rely on medication rebates to fill their coffers.

For nearly a decade, federal funding for ADAP has remained largely flat despite rising costs. In fact, federal funding has not accounted for more than 50% of annual ADAP funding since 2008 (Figure 2). Meanwhile, rebates now account for more than 50% of annual ADAP budgets.

Figure 2 - Total ADAP Budget, By Source, FY1996–FY2024

Photo Source: NASTAD

This places ADAPs at significant risk of being unable to continue providing the level of care and services they offer due to a revenue mechanism subject to “…intense market and regulatory volatility.”

What does this phrase mean?

Essentially, rebates rely on two things: high drug list prices and low 340B purchase prices. Under the rebate model, programs purchase medications at full list price and are reimbursed by pharmaceutical manufacturers for the difference between list price and 340B purchase price.

But what happens when price controls, such as those implemented under the Medicare Drug Negotiation Program created by the IRA, are introduced?

The purpose of the Medicare Drug Price Negotiations is to essentially limit what pharmaceutical manufacturers can charge the federal Medicare program for their medications. This means that a drug with an annual Wholesale Acquisition Cost of $36,000 may be forced to sell its medication to Medicare for $16,000 per year, which significantly reduces the total rebate amount that ADAP pharmacies may receive.

This doesn’t just apply to medications that treat HIV, but to every medication eligible for 340B rebates.

The reality is that, if patients get their way, government price controls are all but assured.

73% of patients surveyed in 2023 said that there was not enough government regulation when it comes to limiting the price of prescription drugs, with 67% or more of respondents agreeing with that sentiment across party affiliation (82% of Democrats, 67% of Independents, and 68% of Republicans; Sparks et al., 2024).

This finding wasn’t a one-time fluke; patients have long been in favor of significant increases in government regulations as they relate to controlling prescription drug prices, with 88% of patients being in favor of limiting annual drug price increases to no more than the rate of inflation, 88% of patients being in favor of the government negotiation drug prices for the Medicare program, 78% being in favor of importing drugs from Canada, 72% being in favor of increasing taxes on pharmaceutical companies that refuse to negotiate prices with the federal government, 63% being in favor of increases taxes on companies who drug prices are too high, and 57% being in favor of ending tax breaks given to drug companies for advertising spending.

What this could mean for state ADAPs is that, with increased patient fury at the healthcare industry and systems, in general, elected officials are more likely to begin listening to patients than to industries. Should significant price controls be implemented, the rebate model could collapse, leaving ADAPs facing the loss of 50% or more of their annual operating budgets.

How Are ADAPs Responding

Faced with the various funding hurdles, state and territorial ADAPs are beginning to implement “cost containment” measures (translation: cuts) that will result in significant negative outcomes for the patients who rely upon ADAP for their HIV medications.

These “cost containment” measures include (but are not limited to):

• Decreasing income eligibility requirements so that fewer PLWHA are eligible for benefits
• Delaware eligibility decreased from 500% of the FPL to 350%, effective for all clients as of April 1st, 2026, impacting ~176 patients
• Florida decreased from 400% to 130% of the FPL effective March 1st, 2026, impacting ~16,000 patients
• Kansas decreased from 400% to 250% of the FPL to receive ACA premium assistance, while maintaining the 400% limit for full-pay medication coverage, impacting ~230 patients
• Pennsylvania decreased from 500% to 350% of the FPL effective October 1st, 2026, impacting ~1,592 patients
• Rhode Island decreased from 500% to 400% of the FPL effective March 1st, 2026, impacting ~51 clients
• The following states are considering additional changes to income eligibility:
• Arkansas, Louisiana, New Jersey, Rhode Island, Virginia, & Washington State
• Reducing RWHAP Part B funding for core medical/support services
• Implemented in Arkansas, Connecticut, Delaware, Kansas, Louisiana, Michigan, Pennsylvania, Rhode Island, Virginia, & Wisconsin
• Implementing or reimplementing 6-month recertification requirements
• Implemented in Alaska, Oklahoma, & Rhode Island
• Introducing per-patient expenditure caps
• Implemented in Arizona, Colorado, Delaware, the District of Columbia, & Nevada
• Reducing formulary coverage for both HIV-related and non-HIV-related medications
• Implemented in Arizona, Florida, Louisiana, Michigan, Nevada, & Pennsylvania
• Decreasing, restricting, or eliminating insurance premium assistance
• Implemented in Florida, Michigan, Montana, Oklahoma, & Wisconsin (NASTAD, 2026b)

HIV advocates and activists are also concerned about the potential reintroduction of state ADAP program waitlists, with Arkansas, Louisiana, & New Jersey reporting that they are considering implementing waitlists (NASTAD, 2026b).

The reality of this landscape is that trouble is brewing for RWHAP and the PLWHA who depend upon its various parts and programs to stay alive. ADAP Advocacy will continue to monitor and report on circumstances as they develop.

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] Holahan, J., O’Brien, C., & Kennedy, N. (2025, December 18). Understanding the Extraordinary Increase in ACA Premiums in 2026. Washington, DC: Urban Institute: Research: Publication. https://www.urban.org/research/publication/understanding-extraordinary-increase-aca-premiums-2026

[2] KFF. (2025, January 24). HIV Viral Suppression Rate in U.S. Lowest Among Comparable High-Income Countries. Washington, DC: KFF: HIV/AIDS. https://www.kff.org/hiv-aids/hiv-viral-suppression-rate-in-u-s-lowest-among-comparable-high-income-countries/

[3] 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

[4] National Alliance of State and Territorial AIDS Directors. (2026b, February 09). NASTAD ADAP Watch - February 2026. Washington, DC: National Alliance of State and Territorial AIDS Directors. https://nastad.org/resources/nastad-adap-watch-february-2026

[5] Sparks, G., Kirzinger, A., Montero, A., Valdes, I., & Hamel, L. (2024, October 04). Public Opinion on Prescription Drugs and Their Prices. Washington, DC: KFF: Health Costs. https://www.kff.org/health-costs/public-opinion-on-prescription-drugs-and-their-prices/

The Medical Monopolies Monopolizing Modern Medicine

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

Imagine a scenario where every aspect of your healthcare is owned by the same company—your health insurance, your doctor, your pharmacist, and the company that manufactures the medication you’ve just purchased. For many Americans, this is already a reality.

Enter CVS Health.

Photo Source: Barchart

When most people hear “CVS,” they think of the national chain of pharmacies with over 9,000 locations across the United States. They think of either filling a prescription, buying a holiday greeting card, or buying other small retail items.

What they don’t often think of is the fact that CVS Health doesn’t just own pharmacies; they own:

• Aetna, the health insurance giant serving over 36 million Americans;
• Oak Street Health medical clinics, the American Association of Retired Persons (AARP)-approved primary care provider for older and disabled Americans on Medicare;
• CVS Caremark, the pharmacy benefit manager (PBM) that negotiates drug prices that patients pay and which processes nearly 30% of all prescriptions in the United States in a given year; and,
• Cordavis, a relatively new pharmaceutical company created by CVS to manufacture biosimilar medications.

As Representative Alexandria Ocasio-Cortez (D-NY-14), during a hearing in the Health Subcommittee of the Committee on Energy and Commerce, put it when questioning CVS Health’s CEO, “Mr. Joyner, this is quite a bit of market concentration. Wouldn't you agree?” (AOC, 2026).

Joyner’s response was typical of companies that control a monopoly:

“No, I wouldn't agree that it's market concentration. I would suggest it's a model that works really well for the consumer.” (AOC, 2026).

CVS Health’s former CEO, Karen S. Lynch, very succinctly summed up the company’s strategy in 2024:

Many of our four million Medicare Advantage members can have access to our Oak Street clinics. We have a captive audience with benefit designs that can support the physicians [in the clinics]. We can drive patients to [the Oak Street health centers] (Japsen, 2024).

The often glib responses from health insurance CEOs did not go unnoticed in the Senate.

On February 11th, Senators Elizabeth Warren (D-MA) (seen right) and Josh Hawley (R-MO) (seen left) introduced the “Break Up Big Medicine Act of 2026,” a bill that would prevent PBMs, insurers, and prescription drug and medical device wholesalers from being owned by the same company.

Photo Source: The Wall Street Journal

The “Break Up Big Medicine Act of 2026” would:

• Prohibit a parent company from owning a medical provider or management services organization and a PBM or an insurer;
• Prohibit a parent company of a prescription drug or medical device wholesaler from owning a medical provider or management services organization;
• Require that a company in violation of these provisions come into compliance within one year of the bill’s enactment;
• Create automatic penalties if a company fails to comply in a timely manner, including disgorgement of profits and forced sales of assets;
• Enable the Federal Trade Commission (FTC), Department of Health and Human Services, Department of Justice (DOJ), state attorneys general, and private parties to bring lawsuits against violators; and
• Allow the FTC and DOJ to review and block future actions that would recreate the conflicts of interest prevented by the bill (Elizabeth Warren, 2026).

Essentially, this bill aims to break up healthcare monopolies in the United States.

About the legislation, Senator Hawley said:

Americans are paying more and more for healthcare while the quality of care gets worse and worse. In their quest to put profits over people, Big Pharma and the insurance companies continue to gobble up every independent healthcare provider and pharmacy they can find. Working Americans deserve better. This bipartisan legislation is a massive step towards making healthcare affordable for every American (Josh Hawley, 2026).

Senator Warren echoed:

There’s no question that massive health care companies have created layers of complexity to jack up the price of everything from prescription drugs to a visit to the doctor. The only way to make health care more affordable is to break up these health care conglomerates. Our bill would be a monumental step towards ending the stranglehold that corporate giants have on our broken health care system (Elizabeth Warren, 2026).

The CVS Health example is a classic case of a monopoly that should have been broken up before it even got started… but, since the 1980s, enforcement of antitrust and monopoly laws in the U.S. has been… spotty, at best.

Over time, more and more aspects of American society, life, and commerce have become “vertically integrated,” meaning that businesses—particularly in the technology and health sectors—have gone out of their way to purchase and control multiple stages and steps of supply chains.

According to many of the businesses that control these monopolies (e.g., Google, Amazon, Meta), these purchases are “great for consumers” because they centralize purchasing and make things “easier.”

As Mr. Joyner from CVS Health would argue, “…it's a model that works really well for the consumer.”

Matt Toresco, Founder and CEO of Archo Advocacy and Co-Founder of We The Patients, is a leading voice in patient advocacy. Toresco further highlights this issue:

Vertical integration industrializes the problem. It does not create it. The deeper issue is that we built a system where financial entities control access to care without carrying medical liability for the consequences. Insurers shape treatment through coverage design. Step edits. Fail first protocols. Closed formularies. Technically, they do not practice medicine. Operationally, they influence it every day. If a delay harms a patient, the physician carries the malpractice risk. The insurer carries none. That asymmetry drives everything. You can reduce integration. If you do not align authority with accountability, you will reorganize power instead of reforming it (Toresco, 2026).

Photo Source: AntiTrust Law Journal LinkedIn

A working paper published in the Antitrust Law Journal neatly summed up the lack of enforcement:

The decline of antitrust enforcement from the 1970s to the present was not achieved through legislative reform in response to public demand. It was the result of decisions made mostly in the shadow by politically unaccountable officials—judges and regulators—whose views of antitrust at the time of their appointment were (in most cases) not publicly known or perhaps even clear in their own minds.

To explore the potential forces behind this weakening, we considered two alternative hypotheses. The first is that these actions were the result of an enlightened elite of technocrats who promoted efficiency against the will of a Congress dominated by irrational populistic hostility to big business The alternative view is that big business drove a steady decline in antitrust enforcement against the public will to benefit itself. While we have no smoking gun, the evidence we collected provides more support to the second hypothesis than the first (Lancieri, Posner, & Zingales, 2022).

So, will the Break Up Big Medicine Act succeed?

Well, it’s hard to say.

But it’s a great first step.

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] Alexandria Ocasio-Cortez. (2026, January 22). ICYMI: Ocasio-Cortez Calls Out CVS Health’s Corporate Strategy to Monopolize Patient Care. Alexandria Ocasio-Cortez: Press: Press Releases. https://ocasio-cortez.house.gov/media/press-releases/icymi-ocasio-cortez-calls-out-cvs-healths-corporate-strategy-monopolize

[2] Elizabeth Warren. (2026, February 10). Warren, Hawley Introduce Bipartisan Bill to Break Up Big Medicine. Elizabeth Warren: Newsroom: Press Releases. https://www.warren.senate.gov/newsroom/press-releases/warren-hawley-introduce-bipartisan-bill-to-break-up-big-medicine

[3] Japsen, B. (2024, February 08). CVS Stays With Clinic Expansion Strategy Despite Walgreens Woes. New York, NY: Forbes. https://www.forbes.com/sites/brucejapsen/2024/02/08/cvs-sticking-with-clinic-expansion-strategy-despite-walgreens-woes/

[4] Josh Hawley. (2026, February 11). Hawley, Warren Introduce Bill to Break Up Big Medicine. Josh Hawley. https://www.hawley.senate.gov/hawley-warren-introduce-bill-to-break-up-big-medicine/

[5] Lancieri, F., Posner, E. A., & Zingales, L. (2022, August). The Political Economy of the Decline of Antitrust Enforcement in the United States. Antitrust Law Journal, 85(2), 442-519. https://www.americanbar.org/content/dam/aba/publications/antitrust/journal/85/2/political-economy-decline-of-enforcement.pdf

[6] Toresco, M. (2026, February 26). BREAKING UP BIG MEDICINE WON'T FIX HEALTHCARE UNTIL WE BREAK UP STATE MONOPOLIES. Charleston, SC: Archo Advocacy: Archo Advocate Brief: Posts. https://archo-advocate-brief.beehiiv.com/p/breaking-up-big-medicine-won-t-fix-healthcare-until-we-break-up-state-monopolies

Medicare Drug Price Negotiations Again Target High-Impact Prescriptions, But at what Cost?

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

The Trump Administration recently released the next round of medications selected for the Medicare Drug Price Negotiation Program, which includes 15 medications payable under Medicare Part B and/or covered under Medicare Part D, largely for the treatment of chronic diseases and cancer.

Photo Source: CMS

Of greatest concern to ADAP Advocacy is the inclusion of Biktarvy, the most commonly prescribed single-pill oral regimen to treat HIV made by Gilead Sciences, currently taken by over 430,000 people living with HIV in the United States (Gilead Sciences, 2026), or 35.8% of People Living With HIV/AIDS (PLWHA).

In June 2025, ADAP Advocacy submitted public comment to the Centers for Medicare and Medicaid Services (CMS). In this public comment, it requested that CMS create a carve-out exemption for all medications used for the treatment of HIV/AIDS in order to avoid any interruptions of service for PLWHA who rely upon Medicare for their HIV medications.

ADAP Advocacy followed up on this public comment with a sign-on letter to CMS requesting the carve-out exemption, which garnered signatures from nearly 40 organizations and received a direct response from Dr. Mehmet Oz, the current CMS Administrator.

The response?

"CMS acknowledges your recommendation to implement a carve-out exemption for all medications indicated for the treatment and prevention of HIV/AIDS; however, the statute does not specify a specific exclusion for medications used for the treatment of HIV/AIDS from selection under the Negotiation Program."

Essentially, “Sorry. Can’t help you.”

Photo Source: ADAP Advocacy

What Does Price Negotiation Mean?

As ADAP Advocacy detailed in a July 2025 blog, Medicare’s Negotiation Program essentially requires manufacturers to accept the final price after four negotiation meetings set by CMS, reject the offer, and pay a 95% excise tax on all of the medications sold to Medicare payors, or remove their products from the Medicare formularies altogether (Hammond, 2024). Because no business can feasibly accept a 95% excise tax and remain viable, manufacturers are left with the unenviable decision to either accept significant profit losses in the Medicare market or withdraw their drugs (Hopkins, 2025). This process, which is supposed to resemble a negotiation, has been characterized by many as a threat with the full force of the federal government behind it. One public health stakeholder attending ADAP Advocacy’s Health Fireside Chat last year in Minneapolis, Minnesota, called it extortion. 

For PLWHA, the inclusion of one of the most effective single-pill regimens in the history of HIV treatment on this list presents a real and present danger should Gilead Sciences determine that allowing Biktarvy to be purchased at a significant loss by Medicare payors is unacceptable.

Medicare is the 2nd-largest payor of HIV treatment and care in the United States, accounting for 39% of federal spending in 2020, and serving 28% of PLWHA (Dawson, et al., 2023).

Patient advocates continue to share their concerns over Biktarvy, or any other HIV-related product, being targeted by CMS for artificial government price controls. Among them is Aging and HIV Institute’s David “Jax” Kelly, JD, MPH, MBA. Kelly argued, “Nearly 28% of PLWH in the United States are Medicare beneficiaries, and most qualified through disability rather than age… [t]his unique cost profile reflects both the effectiveness and the financial burden of HIV treatment. Interruptions in ART jeopardize not only individual health but also public health goals. Sustained viral suppression—essential to ending the epidemic—depends on reliable, affordable access to medications.”

ADAP Advocacy will follow up with its aforementioned communications with CMS by submitting public comments in response to its request for information about selected drugs and their therapeutic alternatives, because the inclusion of an antiretroviral therapeutic “is playing with fire,” as ADAP Advocacy’s CEO has noted on numerous occasions.

Photo Source: Andreas Marquardt/Shutterstock

What Can Patients Do?

Please find information below on how you can get involved:

[From CMS]:

The Negotiation Program enables Medicare to directly negotiate the prices of certain high-cost drugs. The current cycle of negotiation and renegotiation is underway, and CMS wants to hear directly from patients, caregivers, clinicians, and others to gather input relevant to the selected drugs.

CMS invites you to rally the communities you represent to share information about the public engagement events, including a virtual livestreamed town hall meeting focused on the clinical considerations related to the selected drugs, and private (i.e., not livestreamed or open to press or general public) virtual patient-focused roundtable events, one for each selected drug, for patients, patient advocacy organizations, and caregivers.  

Take Action

• Learn more about the drugs selected for the current cycle of negotiation and renegotiation here.
• Use communication tools available here so that your organization can leverage your various communication channels to share information about these opportunities:
• Complete the Drug Price Negotiation Information Collection Request (ICR).
• Register for public engagement events here. 

Key Dates

• The Drug Price Negotiation ICR is now available, and responses are due by March 1, 2026. It is worth noting that for patients wanting to submit public comments, questions 28-33 are the patient- or caregiver-focused input (so don’t get overwhelmed by the length of the online form)
• Drugs selected for the upcoming cycle of negotiation and renegotiation were announced on January 27, 2026, and registration for the public engagement events is open now until March 6, 2026.
• Public engagement events for Biktarvy include:
• Roundtable event on Monday, April 6 from 2:30 – 4:30 p.m. ET 
• Town Hall Meeting on Wednesday, April 22, Session 1 from 10:30 a.m. – 12 p.m. ET

Photo Source: Portland.gov 

Registration for the opportunity to speak at the public engagement events is now open and will close at 11:59 p.m. PT on March 6, 2026.

• To register for a roundtable event, click here. 
• To register for the town hall meeting, click here. 

Reach out to IRARebateandNegotiation@cms.hhs.gov with any questions, using the subject line “Public Engagement.”

ADAP Advocacy urges patients and patient advocates to weigh in. While financial outlays may be high for PLWHA due to treatment costs, the financial impacts of treatment interruption are far higher. While treatment cessation for any disease state can cause serious complications, the nature of the HIV retrovirus is such that it can quickly mutate to develop resistance to a treatment regimen if that regimen is suddenly halted. This can create a strain of HIV that is multidrug-resistant (MDR-HIV), making the virus more difficult and significantly costlier to treat–and result in premature death. CMS targeting an HIV-related therapeutic signals a threat to AIDS exceptionalism, and it cannot be left to chance.

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

References:

[1] Centers for Medicare and Medicaid Services. (2026, January). Medicare Drug Price Negotiation Program: Selected Drugs for Initial Price Applicability Year 2028. Washington, DS: United States Department of Health and Human Services: Centers for Medicare and Medicaid Services. https://www.cms.gov/files/document/factsheet-medicare-negotiation-selected-drug-list-ipay-2028.pdf

[2] Dawson, L., Kates, J., Roberts, T., Cubanski, J., Neuman, T., & Damico, A. (2023, May 27). Medicare and People with HIV. KFF: HIV/AIDS. https://www.kff.org/hivaids/issue-brief/medicare-and-people-with-hiv/

[3] Gilead Sciences. (2026). Biktarvy. Foster City, CA: Gilead Sciences: Biktarvy: About Biktarvy. https://www.biktarvy.com/about-biktarvy

[4] Hammon, J. (2024, August 19). Price controls – bad policy, big problems. Washington, DC: Paragon Health Institute. https://paragoninstitute.org/paragon-prognosis/price-controls-bad-policy-big-problems/

[5] Hopkins, M. J. (2025, July 10). CALL TO ACTION: HIV Medication Carve-Out Exemption from the Medicare Drug Price Negotiation Program. Nags Head, NC: ADAP Advocacy: ADAP Blog. https://adapadvocacyassociation.blogspot.com/2025/07/call-to-action-hiv-medication-carve-out.html

Florida, Once Again, Imperils the Lives of People Living with HIV/AIDS

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

The state of Florida is in the process of revamping [deconstructing] its state’s AIDS Drug Assistance Program (ADAP) to exclude nearly half of its current enrollees. That plan hit a roadblock when the Florida Department of Health ignored the state statutes governing administrative procedure, which opened it to an administrative action filed by the AIDS Healthcare Foundation (AHF). The state withdrew its proposal but plans to proceed with it…this time, actually following the rules. It represents a temporary win, but much work remains to be done to protect Floridians living with HIV/AIDS reliant on the program. The Florida Legislature appears to be taking steps to address the crisis, as both the House and Senate budget proposals call for additional funding for the drug assistance program. The Senate's budget proposal includes $118 million, while the House's plan offers only $68 million, which represents about half of the funding needed.

How This Started

The emails started circulating on January 7th, 2026 (see Figure 1):

Figure 1 - Email from an ASO

“ADAP will reduce its [Federal Poverty Level (FPL)] eligibility from 400% to 100%.”

“[Co-pay] assistance will only be provided to participants who meet the new eligibility criteria.”

“ADAP-funded insurance coverage will be discontinued.”

“Only generic medications will be covered.” *

And the panic began.

State and national organizations across the country immediately began to both panic and organize:

How can we best support patients who will lose access to their medications, as well as organizations that may face closure as a result of these changes?

The State of Florida Confirms Its Plans

By Thursday, January 8th, 2026, the state of Florida clarified its plans:

Dear Colleagues,

As you are probably aware, ADAP will be moving to a financially sustainable model to benefit the largest population of ADAP clients. We will continue to support the current model (direct dispense, CVS Caremark and insurance) for a two month period to ensure ADAP clients have ample time to seek insurance and medication assistance, if no longer eligible to receive ADAP services through the department. Following this transition period, we will move to direct medication dispensing, capping the eligible federal poverty level at 130%, as well as implementing ADAP formulary changes starting March 1, 2026.

Regarding the formulary changes, Biktarvy will be removed and Descovy will be restricted to only those with renal insufficiency (CrCl <60). All other current ART medications including Tivicay will be available. However, we will monitor cost closely and adjust if needed. A few actions to consider:

• Upon follow up visits, transition to new ART regimen such as Tivicay plus Truvada, other Truvada-based or NRTI-based regimen in combination with integrase inhibitors, or alternative class outside of integrase inhibitors. Please refer to the treatment guidelines: Initiation of Antiretroviral Therapy | NIH.
• For patients on those Biktarvy or Descovy, ensure they have adequate medication until their next clinical visit prior to March 1st.
• For Descovy, providers are required to document the reason: due to CrCl <60 or renal insufficiency on the prescription note section.

Will keep you posted on any additional changes. As always, please reach out if you have any questions.

{Source: U. Choe, personal communication, January 06, 2026}.

So, What Happened?

Florida’s controversial Surgeon General, Joseph Ladapo, stated that the cuts were necessary to prevent a “…projected $120 million shortfall” (Shepard, 2026), but state and national advocates are asking whether or not taxpayer dollars have been illegally diverted or misappropriated (Adamczeski, 2026), pointing to a recent investigation that uncovered the DeSantis Administration’s diversion of $35 million in taxpayer dollars to wage campaigns against two ballot initiatives that would have legalized recreational marijuana use (Amendment 3) and overturned the six-week abortion ban passed by the state legislature (Amendment 4; Mower et al., 2025).

What Happened Next?

Shortly after these announcements, ADAP Advocacy remained publicly quiet, but behind the scenes, it was working on two fronts to help alleviate growing concern. One route has political ties to the governor, while the other option involves potential litigation. That is all the organization has been authorized to say at this time.

AHF almost immediately filed an administrative legal action, arguing that the state of Florida failed to comply with mandatory public rulemaking processes that require it to publish a “Notice of Proposed Rule” (NPR).

Publishing an NPR starts a mandatory 21-day procedural clock during which the public may submit written comments, requests for public hearings, workshop requests, and “lower-cost regulatory alternatives” (LCRAs).

The state of Florida issued this NPR on Wednesday, February 11th.

What This Would Mean for People Living with HIV/AIDS in Florida

The “cost-containment” measures announced by the Florida Department of Health are each, by themselves, draconian cuts that would have devastating negative impacts on People Living with HIV/AIDS (PLWHA) in the state.

In its NPR, Florida proposes the following changes to the program:

Lowering the Income Eligibility Threshold from 400% of the FPL to 130% of the FPL:

In 2023, there were an estimated 123,279 PLWHA in the state of Florida, of whom 36,834 (29.9%) were enrolled in Florida’s state ADAP program (National Alliance of State and Territorial AIDS Directors, 2025).

Should Florida move ahead with its plan to lower its income eligibility cap to 130%—roughly $20,345 / year for an individual—potentially up to half of patients currently enrolled (between 16,000-20,000 PLWHA) would be disenrolled (Figure 2).

Figure 2 – Florida State ADAP Enrollees by Percentage of the Federal Poverty Level, 2024

Photo Source: ADAP Advocacy

For context, capping income eligibility at 130% would make Florida one of just 4 state ADAPs with income eligibility caps below 300% of the FPL, along with Utah (250%), Texas, and Oklahoma (both 200%; ADAP Advocacy, 2025).

Significant and Potentially Deadly Changes to the ADAP Formulary:

ADAP rules currently require that ADAP formularies include at least one medication from each class of core antivirals. The NPR issued by the state of Florida eliminates this language altogether.

Patients who remain eligible for ADAP would face significant restrictions on the medications they can take. As detailed in the email from the Florida Department of Health, the most popular and commonly prescribed medication to treat HIV/AIDS, Biktarvy, will be removed from the formulary.

Biktarvy, a single-pill oral regimen made by Gilead Sciences, is taken by over 430,000 people living with HIV in the United States (Gilead Sciences, 2026), or 35.8% of PLWHA.

By removing Biktarvy from the ADAP formulary, the Florida state government will be forcing impacted patients to transition off of the medications that are the standard of care to older, less effective multi-pill regimens in order to “contain costs.”

While this initial statement has been removed from the NPR, AHF has advised state advocates that the Florida Department of Health is separately attempting to restrict access to Biktarvy and Descovy through an informal policy outside the rulemaking process.

Dismantling the Health Insurance Premium Plus and Marketplace Premium Assistance framework:

Additionally, Florida’s plan includes discontinuing health insurance continuation payments for ADAP clients. Insurance continuation is a process that allows state ADAPs to pay for various aspects of private health insurance coverage, including those plans made available to patients on the Health Insurance Marketplace under the Affordable Care Act, and the vast majority of state ADAPs participate in some form of insurance continuation purchasing, be that through premium assistance, paying deductibles, and/or paying co-pays (Figures 3-5).

Figure 3 – State ADAP Programs That Pay Private/Marketplace Insurance Premiums, 2023

Photo Source: ADAP Advocacy

Figure 4 – State ADAP Programs That Pay Private/Marketplace Insurance Deductibles, 2023

Photo Source: ADAP Advocacy

Figure 5 – State ADAP Programs That Pay Private/Marketplace Insurance Co-Pays, 2023

Photo Source: ADAP Advocacy

In the recently filed NPR, Florida significantly narrows this framework by limiting the program to medication co-pay and deductible assistance through a limited number of contracted pharmacies.

Eliminating Part A information sharing in an effort to implement artificial administrative barriers:

Another change announced in the NPR is the removal of Ryan White Part A programs from the definition of who can issue a “Notice of Eligibility” (NOE), and the elimination of the provision that allowed Part A NOEs to satisfy ADAP (Part B) eligibility requirements.

For the uninitiated, Part A of the Ryan White Cares Act funds grants to Eligible Metropolitan Areas (EMAs) and Transitional Grant Areas (TGAs)—areas of the country with populations of at least 50,000 people that have seen between 1,000 and 2,000 AIDS diagnoses in the most recent five years.

Florida’s proposed change would require every Part A client to qualify separately for ADAP services, resulting in additional paperwork and administrative costs that increase the risk of lapses in coverage, administrative delays, and missed doses or treatment abandonment. Because of the nature of the HIV virus, missed doses or abandoning treatment can result in the mutation of the virus, creating drug-resistant strains. Lapsed treatment also assures that viral suppression will evaporate, increasing the risk of outbreaks of a multi-drug resistant strain of HIV.

Administrative burdens are a common tool used by public (in this case, the state of Florida) and private (e.g., insurance companies) payers to increase the likelihood that otherwise eligible program applicants will abandon application and/or renewal processes.

For example, in 2021, in an effort to artificially reduce its ADAP enrollment numbers, the state of Texas began requiring enrollees to recertify their eligibility in person. This was when the COVID-19 pandemic was still killing thousands of Americans each day, making this requirement potentially deadly to a patient population at severe risk of developing potentially deadly opportunistic infections, solely to serve the state’s goal of decreasing the number of enrollees to “save money.”

Limiting the types of documents acceptable for income verification:

In addition to these changes, the state of Florida is further creating administrative barriers by limiting the types of documents that can be used to verify income eligibility. This change would limit the documents available for use to W-2s, tax returns, pay stubs, unemployment documents, and Medicaid award letters.

This creates a barrier for gig workers (e.g., DoorDash drivers, Uber drivers, contractors), people paid directly in cash, and others with informal financial support by preventing them from submitting Form 1099s, contracts, or other income documents.

Changing program language to eliminate prioritization criteria, waitlist rules, and notice requirements:

Another change introduced in Florida’s NPR would revise the standard language about all program enrollment and services being subject to the availability of funds to exclude additional language that detailed prioritization criteria, rules related to the creation of a waitlist, or notice to enrollees that their coverage may or will be eliminated should funds be reduced or unavailable.

This essentially means the state can simply cease services without providing enrollees with sufficient notice to seek alternative patient assistance.

What Can Advocates Do?

The AIDS Healthcare Foundation has recommended that individuals and organizations follow the following strategy:

Figure 6 – What You Should Do Right Now

Photo Source: AHF

{Source: AIDS Healthcare Foundation, 2026}

Individuals may also directly contact their legislators using the resources below:

To find your representative in the Florida House of Representatives:

https://www.flhouse.gov/FindYourRepresentative

To find your representative in the Florida Senate:

https://www.flsenate.gov/Senators/Find

This Friday (February 20th) at 9 am ET, advocates can join a HIV Patient Access and Advocacy Strategy Convening, hosted by The AIDS Institute. 

In the meantime, ADAP Advocacy announced this week that it is rescinding its three-year travel ban to the state of Florida. This travel ban applied to ADAP board members, staff, consultants, and scholarship-funded patient advocates and precluded hosting any patient advocacy events, such as Fireside Chats, in Florida.

The severity of potential outcomes for PLWHA in the state of Florida “…warrant[s] our change in strategy,” said ADAP Advocacy CEO Brandon M. Macsata. ADAP Advocacy will continue to monitor this situation and will report any additional information as it becomes available.

*This restriction hasn't appeared in any of the formal notices, despite it initially being floated by the state.

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

References:

[1] Adamczeski, R. (2026, January 20). Ron DeSantis will have 'blood on his hands' if HIV funding isn't restored, Democratic chair says. Los Angeles, CA: The Advocate: Politics. https://www.advocate.com/politics/florida-desantis-hiv-medication-funding

[2] ADAP Advocacy. (2025). ADAP Directory. Nags Head, NC: ADAP Advocacy. https://adap.directory/directory

[3] Gilead Sciences. (2026). Biktarvy. Foster City, CA: Gilead Sciences: Biktarvy: About Biktarvy. https://www.biktarvy.com/about-biktarvy

[4] Mower, L., Glorioso, A., & Garcia, J. (2026, January 19). DeSantis admin diverted child welfare and medical funds for consultants, ads. Miami, FL: Miami Herald: News: Florida Politics. https://www.miamiherald.com/news/politics-government/state-politics/article313630394.html

[5] National Alliance of State and Territorial AIDS Directors. (2025). 2025 Annual Report. Washington, DC: NASTAD. https://nastad.org/2025-rwhap-part-b-adap-monitoring-report

[6] Shepard, S. (2026, January 21). New Florida AIDS drug rules may leave 15,000 without HIV treatment options, Democrats say. West Palm Beach, FL: CBS 12: News: Local. https://cbs12.com/news/local/floridas-revised-hiv-treatment-eligibility-raises-questions-from-democratic-lawmakers-south-florida-news-ryan-white-aids-drug-assistance-program-adap-reps-lois-frankel-debbie-wasserman-schultz-and-sheila-cherfilusmccormick-zoom-meeting-january-21-2026