Showing posts with label Ron DeSantis. Show all posts
Showing posts with label Ron DeSantis. Show all posts

Thursday, February 19, 2026

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):

Email from service provider to clients
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

Figure 3
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

Figure 3
Photo Source: ADAP Advocacy

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

Figure 4
Photo Source: ADAP Advocacy

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

Figure 5
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

Figure 6
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

Thursday, May 25, 2023

An Expression of Support for Basic Human Decency

By: Brandon M. Macsata, CEO, ADAP Advocacy Association & Jen Laws, President & CEO, Community Access National Network

Earlier this week, ADAP Advocacy Association and Community Access National Network (CANN) issued a joint statement announcing an embargo of each respective organization’s patient advocacy and education activities within the state of Florida. Both organizations also cited a need to protect advocates and patients from outside of the state from the very real dangers associated with traveling to the state, while also emphasizing that both organizations will continue to support local advocates in the state as they work to create positive public policy changes for Floridians living with HIV. The decision to adjoin both the ADAP Advocacy Association and the Community Access National Network to the previously issued formal travel advisory by the NAACP wasn’t taken lightly because maintaining strong ties to the community is important in generating effective advocacy. The move was not a political statement either, but rather an expression of support for basic human decency.

JOINT STATEMENT ON TRAVEL ADVISORY IN THE STATE OF FLORIDA FOR PEOPLE LIVING WITH HIV On behalf of the ADAP Advocacy Association and Community Access National Network (CANN)

The announcement comes after the state’s governor, Ron DeSantis, signed into law a series of bills targeted toward harming Black, Brown, LGBTQ+, and immigrant people. The transgender community was probably singled out more viciously than any of the marginalized communities throughout this hate-inspired Florida Legislative Session. Make no mistake about it why this effort to enflame a “culture war” is an issue of organizational values and something quite personal to both of us. The non-trans guy here taking issue with the fact that the trans guy here now cannot take “a leak” without fear of being charged with a felony has nothing to do with politics and everything to do with basic human rights.

The fact is we both previously lived in the state for many years – it’s where we started our HIV policy work, even before we knew one another. It is where we met over a decade ago. Upon reflection, we still can regularly be found discussing mutual friends from Florida, those still living and those who have passed on, in different phases of their lives.  

From recalling Bishop S.F. Makalani-MaHee's testimony to the Florida Legislature in 2016, against a bathroom bill (which failed that year), to his death on Transgender Day of Remembrance in 2017, part of this internal discussion was a reflection on the deep history he had with advocates serving both the Transgender and HIV communities of the state. What we’re witnessing right now in Florida is challenging for us, personally and professionally, but state-sponsored discrimination, hate, and stigma drew a line that cannot be ignored.

In 2017, Human Rights Watch published an important report, Living At Risk: Transgender Women, HIV, and Human Rights in South Florida, and the very same year ADAP Advocacy Association published it’s issue paper, Transgender Health: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS Under the AIDS Drug Assistance Program. Both of us worked on the ADAP project, and it was important for a transgender advocate (Jen) with lived experience to lead in writing model policies meant to serve Transgender People Living with HIV. The decision to issue a travel advisory in Florida for people living with HIV is rooted in disparities and areas of improvement emphasized in those two reports.

TRANSGENDER HEALTH: Improving Access to Care Among Transgender Men & Women Living with HIV/AIDS under the AIDS Drug Assistance Program: Model Policy for Ryan White/ADAPs Serving Transgender Clients - (April 2017)
Photo Source: ADAP Advocacy Association

Much of our hearts belong to Florida for the dedication and innovation the people of this state can and do offer, despite every unnecessary public policy challenge they face. People like Mick Sullivan and Donna Sabatino (formerly with Tibotec Therapeutics), Connie Reese and her amazing work with Simply Amazing You Are (SAYA) in Miami-Dade County, Riley Johnson promoting trans equality in accessing medical care via RAD Remedy, Michael Ruppal’s leadership with The AIDS Institute, and the late Tiffany Marrero, who served to voice the experiences of vertical transmission patients and Black Women and only recently left us. Heck, Trelvis Randolph and Maria Mejia both reside in South Florida, and they serve on CANN’s board of directors. These folks not only are colleagues, but they are friends and expressing concern over traveling to a place once call “home” saddens us.

But some things are larger than us. Recognizing the inherent roots of racism, which has prompted the NAACP to issue a travel advisory, our joint statement read, in part:

The state of Florida's moves to harm Transgender people, Black and Brown communities, and immigrant families undermines the exceptional work the state's Health Department has done in the last several years and only serves to further existing health disparities affecting these communities, particularly as it relates to HIV. For example, according to Florida's own data, while Black and Hispanic/Latino communities make up about 15.6% and 26.7% of the state's population, respectively, these same communities represent 37.7% and 39.6% of HIV diagnoses. Put another way, in Florida, while white people experience a rate of HIV diagnoses of 8.5 per 100,000 people, that rate among Black communities is 51.8 and for Hispanic/Latino communities it's 31.7.

Similarly, Florida has, in years past, made extraordinary strides in ensuring transgender people can access HIV related care, specifically by integrating best practices and guidance from the Health Resources and Services Administration (HRSA) on integrating gender affirming care into HIV care provision. Indeed, as a result of these moves, transgender women represent some of the greatest successes in linkage to care, retention in care, and viral load suppression of any demographic in the state. Recently signed bills prohibiting state contracted clinics from providing gender affirming care will have a dramatic affect in reversing these long sought after wins. 

Make no mistake, we are frustrated with an apparent lack of involvement from the federal agency charged with implementing the Ryan White HIV/AIDS Program. Because Ryan White program dollars are passed through the state and then contracted with counties, local areas, or directly with a provider, and because other health initiatives of the state are also part of how providers in Florida acquire funding to provide public health services, they may be prohibited from providing gender affirming care at all - regardless of where those dollars originate (state or Federal).

It is incumbent upon HRSA to provide guidance beyond ‘allowable’ uses and inform that state it has contractual, fiduciary responsibilities associated with its grant and subrecipient contracts to ensure these dollars serve these communities. HRSA must move beyond the language of ‘allowable’ uses to ‘expected integration of best practices.’

In many situations, we have been willing and able to confront harsh environments. Indeed, we recognize the need to be present in the spaces where political forces wish to silence us. However, Florida has crossed a line in becoming hostile to the very existence of Black and Brown and Immigrant and Transgender people, those same communities most affected by HIV. The people who enacted these hateful laws were motivated by hateful politics; our response is motivated by concern for the people we’re charged with representing in our community…many of whom feel silenced. This is a line which we cannot cross and still consider ourselves as living the values we espouse.

We came to the difficult decision that neither the ADAP Advocacy Association or Community Access National Network will host any advocacy or educational event in the state of Florida. We will continue to support local advocates and people living with HIV residing in the state, including scholarship support for intrastate travel by local advocates. We will continue to offer analysis on the state's activities. But we will not ask advocates from outside of the state to risk their mental health or physical safety to travel to 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.