Connecticut’s Misguided Medicaid Proposal Places People Living with HIV/AIDS at Risk

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

The Office of Connecticut Governor Ned Lamont released its Fiscal Year 2027 Recommended Budget Adjustments document (Office of Policy and Management, 2026), in which they recommend removing antiretroviral medications used to treat HIV from the Medicaid exclusion list and adding them to the state’s Preferred Drug List (PDL). Earlier this year, Colorado’s Department of Health Care Policy and Financing (HCPF) considered modifying its protected drug classes and allowing prior authorization for select drugs, a move that threatens to undermine that progress.

Photo Source: SHAHRZAD RASEKH / CT MIRROR

This week, ADAP Advocacy joined HealthHIV in issuing a joint statement on the proposal. Both organizations submitted public comment to the Connecticut General Assembly, maintaining that the health of Connecticuters living with HIV/AIDS is being put at risk if the protected drug class is weakened by adding antivirals to the state’s PDL. To read the public comment, click here.

What is a Medicaid Drug Class Exemption?

At issue in Connecticut is the exemption of medications used to treat HIV/AIDS from being included on the state’s PDL.

An “exemption,” in this case—also known as an exclusion or an exception—means that the medications are considered necessary for patients’ continued good health or survival, and therefore should not be included on the PDL, a tool that is specifically designed to restrict which medications will be covered for patients by limiting coverage to medications for the purpose of cutting costs or limiting expenditures. Exemptions are usually applied to entire classes of drugs and typically include medications used to treat HIV, cancer, and epilepsy. This practice is commonly referred to as the Protected Drug Class (PDC).

Exemptions can be whole—as is the case with medications used to treat HIV—or class-specific, such as medications used to treat mental health issues and epilepsy, in which cases prescriptions are not subject to step-therapy requirements that would require patients to try other medications prior to being prescribed the one they actually need.

Photo Source: MedicareFAQ

Why Adding Medications to Treat HIV to the PDL is a Bad Idea

When a class of medications is exempted from inclusion on a PDL, medications in that class cannot be subject to prior authorization (PA) requirements, patients are able to access the medications that work best to treat their specific strain of HIV, and patients are not forced to endure delays or administrative red tape that might prevent them from accessing and taking the medications they need to stay alive.

In its budget adjustment document, Connecticut has made a craven attempt to justify including HIV medications on the PDL by suggesting—incorrectly—that medical advances in HIV therapies merit this change:

Now, over two decades later, there have been significant advances in the treatment of HIV and, in recognition of this, the Governor is proposing to lift the current restrictions and include antiretroviral medications on the preferred drug list. This will not only allow the state to receive supplemental rebates on these drugs, but it will also allow for better management of these medications as their inclusion on the preferred drug list will help to ensure practitioners are aligning with clinical criteria and best practices (OPM, 2026).

Not only is this assumption wildly incorrect, but it also amounts to medical malpractice by the State of Connecticut. And all so the state can reap drug rebates to offset expenditures.

Advancements in the quality, tolerability, and efficacy of HIV treatment regimens do not mean that every patient’s HIV can be treated with the same medication.

HIV—a retrovirus that uses reverse transcriptase enzymes to turn its ribonucleic acid (RNA) into deoxyribonucleic acid (DNA), making itself compatible with a person’s own DNA—evolves extremely rapidly, exhibiting the highest recorded biological mutation rate of any organism currently known to science. This is largely due to the reverse transcriptase process, which is prone to errors during viral replication (Andrews & Rowland-Jones, 2017).

In lay terms, this means that medications used to inhibit the reverse transcriptase process—nucleoside reverse transcriptase inhibitors (NRTIs, such Truvada) and non-nucleoside reverse transcriptase inhibitors (NNRTIs, such as rilpivirine, used as part of the Cabenuva long-acting injectable regimen)—are vital for not only maintaining viral suppression, but for ensuring that the HIV virus, itself, is not given a chance to mutate.

What this means for patients is that, once they begin treatment for HIV, lapses in treatment can lead to the HIV virus mutating to create multidrug-resistant strains of the virus. Essentially, if patients suddenly stop taking a medication without replacing it with another NRTI or NNRTI, they risk developing a strain of HIV that is more difficult and more expensive to treat.

Photo Source: Medwave

What Can People Do to Prevent These Changes?

Under current Connecticut law, medications to treat HIV are exempt from inclusion on the PDL precisely because of the nature and rapid mutation of the HIV virus. Changing this drug class exemption literally places the lives of not only people currently living with HIV/AIDS at risk, but also those who might contract a multidrug-resistant strain of HIV from someone whose medications were delayed or no longer covered by Connecticut’s Medicaid program.

Alex Garbera, a long-term survivor of the HIV/AIDS epidemic and patient advocate residing in Connecticut, stated:

“Under current law, classes of antiretroviral drugs are exempt from prior authorization requirements and cannot be included on preferred drug lists. But what the Governor is proposing undermines that protection. PDLs, under the cloak of saving money, may be selecting drugs that are not based on patient needs but on the number of rebates received by the state from drug manufacturers. Sadly, prior authorization is far too common but still imposes an administrative burden on providers, can cause delays in obtaining needed medication, and could result in denial, subject to an appeal process. In my humble opinion, I would say keep the current law exactly as it is for HIV medications, given the complicated medical issues involved.”

For full Bill information, visit:

https://www.cga.ct.gov/asp/cgabillstatus/cgabillstatus.asp?selBillType=Bill&bill_num=HB05040&which_year=2026#

To locate your CT State Legislators, go to:

https://www.cga.ct.gov/asp/menu/cgafindleg.asp

To contact the CT Governor's office, visit:

https://portal.ct.gov/governor/contact-the-governor?language=en_US

The HIV Medicine Association (HIVMA) published an important fact sheet, outlining the potential harm done to HIV-positive patients by allowing prior authorization with HIV medicines, which would be allowed by states adding antivirals to PDLs. ADAP Advocacy will continue to monitor this situation, as well as monitor actions that may be taken in other states that place patients at risk.

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] Andrews, S. M. & Rowland-Jones, S. (2017). Recent advances in understanding HIV evolution. F1000Research, 6, 597. https://doi.org/10.12688/f1000research.10876.1

[2] Office of Policy and Management. (2026, February 04). FY 2027 recommended budget adjustments. Hartford, CT: State of Connecticut: Office of Policy and Management: Budget Document Home. https://portal.ct.gov/-/media/opm/budget/2027-midterm/governors-budget-2027-web-version-3-5-26.pdf?rev=8fedbe3df5384f6fa74c78846ec50017&hash=626EFF74CC89DC9E3949C627466B69D9

Why Modifying Protected Drug Classes Creates a Slippery Slope for Patients Living with HIV

By: Scott Bertani, Director of Advocacy at HealthHIV

As a Person living with HIV who was diagnosed in Denver in the mid-1990s, during a period when treatment options were limited and access was fragile (to say the least), I relied on the Denver Blue Card for my care and access to medications and, during particularly precarious periods, on donation houses and informal community networks to stay alive when formal systems fell short. I lost many friends during those years, and I remember clearly what it meant to live before truly effective HIV antiretroviral therapy existed. The Colorado Department of Health Care Policy and Financing’s (HCPF)  consideration of modifying protected drug classes and allowing the use of prior authorization for select drugs threatens to undermine that progress.

Photo Source: Manatt | January 27, 2026

In 1996, when protease inhibitors first came online, they did more than change treatment guidelines—they saved people who would not have been alive the following month. The shift was so profound that one of our local bars, Proteus, was euphemistically renamed by many of us as "Protease," reflecting how seismic that moment felt within the community. 

Back then, cherished friends and bar owners—many connected through BJ’s and the Carousel Ball—helped establish the Tavern Guild as a way to formalize what BJ’s, Mike’s on Broadway, Charlie’s, Blush & Blu, and similar LGBTQ-safe spaces had long done informally—strengthen access to community-based resources, collective buying power, mutual aid, and care. Their work reinforced what many of us already knew from lived experience: progress in HIV has never been driven by medicine alone, but by the constant interaction between clinical innovation, policy decisions, and community infrastructure. That history—contemporary with the Denver Principles—shapes how I read Policy Action 6: not as an abstract cost-containment proposal, but as a set of decisions that land on real people whose health, stability, and longevity depend on continuity of care. It’s why—I feel—that the Colorado Department of Health Care Policy and Financing’s (HCPF) consideration of modifying protected drug classes and allowing prior authorization for select HIV drugs risks reintroducing access barriers we have long since left behind.

(With that, I relinquish the soapbox and turn to Colorado’s HCPF proposed Policy Action 6—grounded in lived-experience and the principle that has guided HIV policy and advocacy for decades: "Nothing about us, without us").

Across HIV prevention and care, we see the same pattern repeat: funding debates occur in one lane, policy design in another, implementation somewhere else, and the consequences show up downstream with patients, providers, and communities. The uncomfortable question is who ultimately absorbs the cost—both quantitatively and qualitatively—when that chain breaks. 

Cost growth is a legitimate concern. It has long been debated across ecosystems affecting HIV treatment—by Prescription Drug Affordability Boards; Medicaid and provider and therapeutics committees; Medicare benefit designers; AIDS Drug Assistance Programs (ADAPs); the Affordable Care Act Marketplace; employer-sponsored coverage; and others. In response, states and payers have operationalized those concerns through cost-containment mechanisms such as formulary redesign, eligibility adjustments, and increased scrutiny of high-cost antiretroviral therapies, particularly widely used single-tablet regimens that account for a significant share of HIV drug spending, as reflected in recent IPAY 2028 actions under the Inflation Reduction Act.

Policy Action 6 emerges from this same cost-growth context. However, reintroducing prior authorization and step therapy for communicable disease medications—especially HIV drugs—introduces predictable treatment delays and administrative barriers that undermine adherence and viral suppression. Any savings analysis, including evidence-based spending and utilization patterns, should therefore account for downstream clinical and system costs, not just pharmacy spending and rebate leverage.

Photo Source: PharmacyTimes.com | Image Credit: © piter2121

In practice, utilization management often shifts costs out of the pharmacy benefit and into care coordination, emergency coverage, and re-engagement efforts. Those costs do not disappear; they reappear elsewhere in the system and are shouldered by Ryan White providers, safety-net clinics, and public health programs. In those settings, administrative delays, regimen uncertainty, and coverage churn undermine stability before it is ever achieved. That disruption is managed by Title XIX targeted case management, Ryan White medical case management and non-medical supportive services, and Part C clinic staff and administrators. This list is not exhaustive and is rarely reimbursed at a level that reflects improved health outcomes.

While Policy Action 6 is framed as a measured return to utilization management that would apply prospectively after July 2027 and preserve continuity for patients deemed "stable," the greatest disruption from prior authorization and step therapy occurs upstream—during initiation or rapid starts, regimen switches and re-initiation, and early treatment.

As a result, these programs must devote—often divert—additional staff time to care coordination, enrollment troubleshooting, and compliance management. That operational burden adds strain through burnout, retention challenges, and reduced workforce readiness, particularly when churn occurs at both the reimbursement level and the policy level, including through federal and HRSA requirements.

Cost containment is vital to the implementation of a healthy Colorado, including for people enrolled in public assistance programs, as the Department of Health affirms. However, rebate strategies that rely on utilization management function by introducing administrative hurdles—not by changing clinical care—and those hurdles directly affect whether people remain on treatment and stay virally suppressed.

In many ways, this is a Palisade peaches–to–Rocky Ford cantaloupe comparison: both are nutritious, but the differences are wide, not narrow—much like lifelong HIV medication management in the real world. Short-term utilization metrics do not account for resistance history, hepatitis B co-infection, or clinically meaningful differences across integrase strand transfer inhibitor (INSTI) classes, including the higher resistance barriers and durability of second-generation INSTIs compared with earlier agents. Nor do they reflect the realities of aging with HIV, including low CD4 nadirs and the long-term durability of immune recovery. When treatment decisions intersect with comorbidities and acute stressors—such as COVID-19, influenza, or measles—disruptions over decades of care can compound treatment fatigue, adherence challenges, and cumulative harm in ways utilization controls are not designed to absorb.

Colorado's statutory framework already reflects this concern. Section 10-16-152 paused prior authorization and step therapy for HIV medications and required a study—explicitly including qualitative patient and provider experience—before any policy reversal. That structure recognizes that access, treatment stability, and adherence are central to cost-effective HIV care, and that utilization management assumptions should be tested rather than presumed.

Washington's experience provides a relevant real-world test of the same assumptions underlying Policy Action 6, including the expectation that utilization management can be reintroduced without destabilizing treatment or shifting costs downstream. Through a legislatively directed budget proviso, Washington required the Health Care Authority (HCA) to remove prior authorization for all FDA-approved HIV antiviral drugs under Apple Health beginning January 1, 2023, and to report annually on utilization, expenditures, and regimen switching. That proviso—adopted in SB 5092, section 118.6.a—also prompted the convening of the HIV Medication Access Workgroup (HMAW).

Through the HMAW process, stakeholders consistently documented that prior authorization, step therapy, and regimen disruption introduced administrative friction that delayed access, destabilized effective treatment, and increased churn within Medicaid HIV care. Participants emphasized that utilization management strategies intended to favor lower-cost or multi-tablet regimens did not operate in isolation, but shifted costs downstream to Ryan White providers, safety-net clinics, and public health systems tasked with mitigating treatment interruptions and re-engaging patients. In this context, "continued access" often existed on paper while continuity of care eroded in practice.

Photo Source: ADAP Advocacy | iStock Rights Purchased

As required by the proviso, HCA published its 2024 legislative report on HIV antiviral drugs, analyzing utilization, expenditures, and available health outcomes data following the removal of prior authorization. Viral load data were available for approximately 42 percent of Apple Health clients receiving HIV treatment in 2022—more than 3,000 individuals—representing a substantial real-world Medicaid population. While HCA appropriately cautioned that this subset cannot be assumed to represent all clients, it did not characterize the data as unreliable or dismiss observed differences across regimen types.

Within this cohort, patients initiating treatment on single-tablet regimens demonstrated higher rates of viral suppression than those starting on multi-tablet regimens or switching regimens. Although insufficient to establish causality, these findings establish directionality and challenge the assumption that regimen form and administrative disruption are clinically neutral—particularly in Medicaid settings shaped by utilization management, coverage churn, and administrative delay.

Preventing a single HIV infection avoids hundreds of thousands of dollars in lifetime medical costs, with some estimates exceeding one million dollars depending on treatment scenarios. Given these well-established costs, policy decisions that risk even modest reductions in adherence or viral suppression should not be evaluated solely on short-term pharmacy spending or rebate leverage.

Notably, Washington ultimately codified the policy direction reflected in the proviso and stakeholder findings. In 2025, the Legislature enacted SB 5577, requiring Medicaid coverage of all FDA-approved HIV antiviral drugs without prior authorization or step therapy for both fee-for-service and managed care enrollees, effective July 1, 2025. This statutory action reflects a legislative determination that, for HIV treatment, utilization management introduces unacceptable risk to treatment stability and system sustainability.

The lack of complete outcomes data argues for caution, not for reinstating prior authorization and step therapy based on projected savings alone. Policy Action 6 assumes these controls can be reintroduced for HIV drugs without disrupting care or shifting costs outside the pharmacy benefit—an assumption that has not been supported by real-world experience. That assumption is not only incorrect, but—I feel—potentially harmful for Persons living with HIV in Colorado.

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] Martin, K. (2025, August 06). The 340B Drug Pricing Program: How It Works and Why It’s Controversial. Commonwealth Fund. https://doi.org/10.26099/210h-wv98

[2] Rojas, Dutch. (2025, January 29). The Charity That Pays Like Wall Street. The Rojas Report. https://dutchrojas.substack.com/p/the-charity-that-pays-like-wall-street?utm_campaign=email-post&r=3z1yhv&utm_source=substack&utm_medium=email

Fireside Chat Retreat in Atlanta, GA Tackles Inflation Reduction Act's Adverse Impact on Patient Care

By: Brandon M. Macsata, CEO, ADAP Advocacy & Matt Toresco, Chief Executive Officer, Archo Advocacy LLC

ADAP Advocacy hosted its Health Fireside Chat retreat in Atlanta, Georgia, among key stakeholder groups to discuss the adverse impact on patient care being caused by the Inflation Reduction Act (IRA). The Health Fireside Chat was held from Thursday, September 25th, to Saturday, September 27th. It was a continuation of the conversation surrounding the IRA's drug price controls, which convened earlier this year in Minneapolis, MN. Over two dozen diverse health policy stakeholders attended the event.

Photo Source: Getty Images

The IRA discussion —including its pill penalty provisions, challenges community pharmacies are facing, more restrictive drug formularies increasing, non-medical switching, and patients absorbing greater costs due to shifts from co-pays to co-insurance—was designed to capture key observations, suggestions, and thoughts about how best to address the challenges being discussed at the Health Fireside Chat. The following represents the attendees:

• Guy Anthony, Founder & Executive Director, Black, Gifted & Whole Foundation
• Ninya Bostic,  National Policy & Advocacy Director, Johnson & Johnson
• Richard Brown, Development Manager, Patient Advocate Foundation
• Tori Cooper, Director of Community Engagement, Human Rights Campaign
• Erin Darling, Associate Vice President & Counsel for Federal Policy, Merck
• Nick Garlow, Managing Director, Rational360
• Dusty Garner, Patient Advocate
• Kathie Hiers, President & CEO, AIDS Alabama
• Mark Hobraczk, Director of Public Policy, Ai Arthritis
• Connie Jorstad, Director of Government Relations, ViiV Healthcare
• Amanda Kornegay, Owner, Kornegay Consulting, LLC
• Jen Laws, President & CEO, Community Access National Network
• Darnell Lewis, Paramedic Crew Chief & Patient Advocate
• Brandon M. Mascata, CEO, ADAP Advocacy
• Travis Manint, Director of Communications, Community Access National Network
• Michiel Peters, Head of Advocacy Initiatives, Global Coalition on Aging
• Kalvin Pugh, Director of State Policy, 340B, Community Access National Network
• Stacy Reliford, Alliance Development Director, Pfizer
• Andrew Scott, Director Strategic Alliances and Issue Advocacy, Bristol-Myers Squibb
• Larry Scott-Walker, Patient Advocate
• Ranier Simons, Consultant, ADAP Advocacy
• David Spears, Founder & Director, Magic Box LLC
• Jason Sterne, Director, Policy Advocacy and Alliances, Gilead
• Matt Toresco, CEO, Archo Advocacy
• Monique Whitney, Executive Director, Pharmacists United for Truth and Transparency
• R. Wayne Woodson, Executive Diretor, NEASM

To level set and provide background for discussions, attendees are sent suggested readings in advance. The following are just a few from the thorough list provided for this session:

• The Inflation Reduction Act (IRA): Impact on Medication Pricing, Spending, Affordability, and Access – Analysis by Pioneer Institute
• Alarm Bells are Ringing: Medicare Drug Price Negotiation Program Will Fail Without Changes – Op-Ed by B. Douglas Hoey, RPh, MBA in Drug Topics
• CMS Draft Guidance Creates Regulatory Vacuum in 340B Drug Pricing – Blog by Travis Manint, Community Access National Network
• Is Trump's Executive Order on Most Favored Nations Drug Pricing a Wet Noodle? – Blog by Ranier Simons, ADAP Advocacy
• Three reasons Congress should fix the IRA’s pill penalty – Blog by Brianna Allen, PhRMA
• The Inflation Reduction Act’s Impact Upon Early-Stage Venture Capital Investments – Article in Therapeutic Innovation & Regulatory Science

ADAP Advocacy is pleased to share the following brief recap of the Health Fireside Chat. There were two discussion frameworks:

What Does Effective Advocacy Look Like:

• Defining Effective Advocacy: Data-Guided Strategies for Patient & Policy Impact
• What Works: Cutting Through the Noise in Patient Advocacy
• Shaping Advocacy That Moves Policy
• Building the Blueprint: Effective Advocacy Together

Measuring What Success Looks Like:

• Redefining Success: Measuring Advocacy Wins for Patients & Policy
• What Counts: Defining Real Success for Patients & Policy
• From Policy to Impact: What Success Really Means & Looks Like in Action
• Measuring The Wins: Success Through Shared Impact

Every major policy fight (IRA, 340B, PDABs) ultimately comes back to protecting the patient–provider relationship and the decisions made within it. Patient advocacy is most effective on these issues through branding and and demonstrating value. To that end, patient advocacy must grow its brand and demonstrate both its current and future impact. Meanwhile, pharmaceutical industry partners need to better communicate the value of advocacy internally across medical, policy, regulatory, commercial, and patient support teams. Building capacity, whether alone or in partnership, is essential.

The group identified numerous policy priorities and the need for better coalition building. Future patient advocacy has to address gaps in access to care and treatment. The IRA weakens Medicare's Six Protected Drug Classes and policymakers need to be reminded why these health conditions were protected in the first place. Advocacy organizations need to focus on clearly describing the impacts of policy issues and helping patients see them, as is being done with educating patients on why reforms are needed to strengthen the 340B Drug Pricing Program.

The ongoing government shutdown also shaped much of the policy discussion, with an agreement that longtime allies in Congress need to be engaged but also potential new voices should be cultivated. The work done by patient advocacy groups and healthcare provider associations working with North Carolina Republican Senator Thom Tillis was cited as a prime example. Sen. Tillis has introduced legislation—"Ensuring Pathways to Innovative Cures (EPIC) Act"—to fix the Inflation Reduction Act's small molecule “pill penalty” to ensure continued R&D investments into small molecule medicines.  The Global Coalition on Aging and the Alliance for Aging Research spearheaded 70+ organizations in sending a letter to congressional leadership urging them to support the EPIC Act.

Photo Source: Government Printing Office

Some recent and upcoming milestones offer patient advocacy organizations additional opportunities to shape the policy conversation. They include:

• September 30, 2025: CMS released final guidance for third cycle (IPAY28) of the MDPNP. CMS released IPAY28 draft guidance in May 2025 for public comment, with the final guidance outlining the process for the third cycle of negotiations.
• October 2025 [Anticipated]: Release of expert report detailing drugs anticipated to be selected in 2026 for the MDPNP. Based on 2024 activities, it is expected that a new white paper or brief will be issued in September 2025 that identifies drugs that are likely to be subject to price negotiation in the third cycle of the MDPNP.
• February 1, 2026: CMS releases the list of drugs selected for negotiation. In 2026, CMS will announce the selection of 15 Part D and Part B drugs for which negotiated prices will go into effect in 2028.
• February 1 – March 1, 2026: Public input period (Information Collection Request, or ICR) following CMS announcement of drugs selected for negotiation. The ICR period is intended to help CMS understand how selected drugs are used and their relative value in clinical practice. Individuals can answer questions across varying respondent types (manufacturers, patients/caregivers, physicians, researchers, and "others"), often with a ~3,000-word limit per question. Question topics include therapeutic alternatives, clinical effectiveness, cost/affordability, unmet needs, patient experiences, and other considerations. 

Aligned stakeholders must use every opportunity to create a public record on the issues related to the Inflation Reduction Act and its impact on chronic health conditions and rare diseases.  No additional Health Fireside Chats are planned for 2025.

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.