Letter to Connecticut Legislature expressing concerns with the Joint Favorable Substitute of HB 5040 and impact on HIV medications
Legislative Office Building, Room 4105
300 Capitol Avenue
Hartford, CT 06106
President Pro Tempore of the Senate Martin M. Looney
Legislative Office Building, Room 3300
300 Capitol Avenue
Hartford, CT 06106
Dear Speaker Ritter and President Pro Tempore Looney:
The HIV+Hepatitis Policy Institute is a national organization promoting quality and affordable healthcare for people living with or at risk of HIV, hepatitis, and other serious and chronic health conditions.
We would like to express our opposition to Section 2 and concerns with Section 3 of the Joint Favorable Substitute of HB 5040.
- Section 2 would remove protections for antiretroviral (ARV) medications for the treatment and prevention of HIV from the imposition of prior authorization or step therapy by allowing them to be given “non-preferred” status on Connecticut’s Medicaid Preferred Drug List (PDL). These protections have been in place for over two decades.
- Section 3 would allow Connecticut to conduct cost-effectiveness reviews of outpatient drugs in Medicaid that could rely on discriminatory measures that devalue patients and require comparisons between U.S. drug prices and those in foreign countries.
Section 2
Allowing ARVs to be given “non-preferred” status would limit patient access to life-saving HIV treatments and preventive drugs by allowing the imposition of prior authorization and step therapy requirements. The selection of a clinically appropriate HIV treatment regimen is highly individualized, and takes into account a patient’s medical history and comorbidities, viral resistance mutations, drug-drug interactions, as well as side effects.
Prior authorization is a well‑documented barrier to care. A recent KFF survey has shown that 4 in 10 insured individuals with chronic conditions experience delays or denials of necessary treatment due to prior authorization processes.[1] A recent report by the HIV Medicine Association has found that inefficient and cumbersome prior authorization requirements cause dangerous delay and disruptions in HIV treatment and prevention, disrupt guideline‑recommended care, and place significant strain on already overstretched providers.[2]
Timely, uninterrupted access to guideline-recommended HIV treatment and prevention is critical for both individual and public health. Continuous access to antiretroviral therapy is key to protecting and maintaining the health of people living with HIV as well as the public health. Delayed or interrupted access risks a high viral load, onward transmission, and the development of resistance mutations that allow the virus to survive treatment with particular drugs or drug classes. This understanding is now widely reflected in federal and state policy prohibiting prior authorization for HIV treatment and prevention. For example, prior authorization is not generally permitted for any antiretrovirals in Medicare Part D–the only drug class among the Six Protected Classes to be given this specific protection.[3] More recently, this protection has been extended to all pre-exposure prophylaxis (PrEP) medications, now covered in Medicare Part B.[4] Federal guidance also prohibits prior authorization for the purpose of steering PrEP users to any particular PrEP drug in non-grandfathered commercial insurance plans as well as in Medicaid Alternate Benefit Plans,[5] and a plethora of state legislation and regulation have imposed similar requirements at the state level.
These policies align with rapid scientific advancement. HIV treatment has evolved significantly since the introduction of effective combination HIV regimens in 1996. Newer regimens are far more tolerable, easier to adhere to, and have fewer side effects and drug-drug interactions than earlier regimens. They also present a higher barrier to the development of mutations that allow the HIV virus to resist treatment, and are now frequently available as a single pill or even as a long-acting injectable. Similarly, HIV prevention has evolved since the introduction of the first daily oral PrEP regimen in 2012, now a generic, with options now including a twice-annual injectable, with more innovations in the pipeline. Prior authorization frequently targets these newer, more-expensive regimens, creating barriers to the most effective and appropriate care. Strangely, the governor’s office memorandum on the proposed legislation cites the existence of these advances as the reason to remove the exemption of ARVs from the PDL.[6]
Adding ARVs to Connecticut’s Medicaid PDL would disproportionately harm the most vulnerable. Allowing ARVs on the PDL would introduce new obstacles for Connecticut patients, caregivers, and safety‑net providers, with the heaviest burdens falling on those with the fewest resources to navigate administrative barriers. In addition, Medicaid enrollees living with HIV who are unable to access the regimen they need through Medicaid may instead resort to the Connecticut AIDS Drug Assistance Program (CADAP), adding fiscal and operational challenges at a time when many ADAPs around the country are already facing deficits and are instituting cost-containment measures; CADAP has already reduced Ryan White HIV/AIDS Program Part B funding for core medical/support services as a cost-containment measure.[7] At a time when the state is working to reduce HIV incidence and eliminate disparities, adding utilization management to these life‑saving medications in Medicaid risks reversing hard‑won progress.
For these reasons, we urge you to preserve Connecticut’s long‑standing protections for antiretroviral therapies and ensure they remain exempt from the Preferred Drug List and related utilization management requirements. Preserving unfettered access to HIV treatment and prevention is essential for the individual and public health of Connecticut residents and for the state’s efforts to end the HIV epidemic.
Section 3
While we are not opposed to clinical effectiveness reviews, we are concerned that Section 3 would allow the use of discriminatory measures and require comparisons to foreign prices that are not comparable to how prescription drugs are priced, paid for, or accessed in the United States.
Connecticut Medicaid should explicitly prohibit discriminatory cost-effectiveness measures that are banned in Medicare. We are concerned that Section 3(b)(2) could allow the use of quality-adjusted life years (QALYs) or similar cost-effectiveness measures that devalue the lives of people with disabilities, older adults, and individuals living with chronic or life-threatening conditions. Congress has explicitly prohibited Medicare from using QALYs and similar metrics in coverage and reimbursement decisions due to their discriminatory impact. Multiple studies have concluded that QALYs undervalue the lives of older adults, people with disabilities, and individuals living with chronic or life-threatening conditions.[8] Several states have adopted similar prohibitions in Prescription Drug Affordability Board and related review processes. To avoid unintended access restrictions and ensure clinical effectiveness reviews do not disadvantage Medicaid beneficiaries, we recommend adding explicit language prohibiting the use of QALYs or similar measures.
Requiring comparisons to foreign prices will create misleading and inaccurate benchmarks. Section 3(b)(1) requires consideration of drug prices in other states and developed nations. Comparing U.S. list prices to prices in other countries does not reflect how prescription drug pricing functions in the United States, particularly in Medicaid. U.S. drug pricing reflects a complex mix of mandatory statutory rebates, negotiated discounts, and safety net programs that substantially lower net prices and support access to care. Medicaid, in particular, receives some of the lowest net prices in the healthcare system through the Medicaid Drug Rebate Program and related requirements. These obligations directly shape pricing decisions and differ fundamentally from pricing structures in other countries.
These U.S.-specific obligations include:
- Statutory rebates: In 2023, manufacturers paid an estimated $42.8 billion in Medicaid rebates and facilitated more than $81 billion in prescription drug purchases through the 340B Drug Pricing Program, supporting safety net providers and the services they deliver to patients.[9]
- Commercial rebates: Total manufacturer rebates paid to Pharmacy Benefit Managers (PBMs) and insurance companies reached $334 billion for all brand-name drugs in 2023.[10]
- Additional HIV drug rebates: HIV drug manufacturers provide over $1.4 billion in annual rebates to states’ AIDS Drug Assistance Programs (ADAPs), further offsetting the cost of HIV medications.[11]
- Direct patient support: Beyond rebates, manufacturers contributed approximately $23 billion in copay assistance in 2024, while also maintaining patient assistance and free drug programs for people who are uninsured or underinsured.[12]
- Global health commitments: Manufacturers, particularly those that have HIV and hepatitis drugs, enter into voluntary licensing agreements that enable generic manufacturers to produce a range of medicines for low- and middle-income countries at deeply reduced prices, making therapies more affordable and accessible to patients across multiple disease areas. HIV companies also support large-scale public health initiatives, including the President’s Emergency Plan for AIDS Relief (PEPFAR), which provides HIV medications at low or no cost in high-burden countries. Of the more than $700 million in global HIV-related philanthropic contributions annually, drug manufacturers account for over $300 million of that total.[13]
We recommend removing the requirement to compare drug prices to those paid in foreign countries.
Thank you for the opportunity to provide comment. For further information or discussion, please contact Carl Schmid, Executive Director, at cschmid@hivhep.org or (202) 462‑3042, or Kevin Herwig, Health Policy Manager, at kherwig@hivhep.org or (617) 666‑6634.
Sincerely,
Carl E. Schmid, II
Executive Director
cc: Charlotte Moller, Legislative and Policy Analyst, Office of the Governor
Sen. Martha Marx, Appropriations Health Subcommittee
Rep. Patricia Dillon, Co-Chair, Appropriations Health Subcommittee
[1] https://www.kff.org/public-opinion/kff-health-tracking-poll-prior-authorizations-rank-as-publics-biggest-burden-when-getting-health-care/
[2] https://www.hivma.org/globalassets/hivma/federal-policy-watch/hivma-policy-considerations-for-prior-authorization-2026.pdf
[3] https://www.cms.gov/medicare/prescription-drugcoverage/prescriptiondrugcovcontra/downloads/part-d-benefits-manual-chapter-6.pdf (section 30.2.5)
[4] https://www.cms.gov/medicare-coverage-database/view/ncd.aspx?ncdid=377&ncdver=1
[5] https://www.cms.gov/files/document/faqs-implementation-part-68.pdf
[6] https://portal.ct.gov/governor/-/media/office-of-the-governor/2026-legislative-proposals/hb-5040-hhs-implementer.pdf
[7] https://nastad.org/sites/default/files/2026-02/nastad-adap-watch-february-2026_2.pdf
[8] National Council on Disability. (2019). Quality adjusted life years and disability discrimination: An analysis of the disabilities addendum to the life-years lost methodology (Report). https://www.ncd.gov/assets/uploads/reports/2019/ncd_quality_adjusted_life_report_508.pdf
[9] Health Resources and Services Administration (HRSA), 340B Drug Pricing Program: Covered Entity Purchases, 2024.
[10] Kristi Martin, “What Pharmacy Benefit Managers Do, and How They Contribute to Drug Spending” (explainer), Commonwealth Fund, Mar. 17, 2025. https://doi.org/10.26099/fsgq-y980
[11] National Alliance of State and Territorial AIDS Directors. 2025. 2025 National RWHAP Part B ADAP Monitoring Project Annual Report: Table 18, Major FY2024 ADAP Budget Categories Compared with FY2023. 2026. https://nastad.org/sites/default/files/2026-02/2026-adap-report-table-18.pdf
[12] IQVIA Institute for Human Data Science, The Use of Medicines in the United States 2024.
[13] Funders Concerned About AIDS. 2026. Philanthropy’s Response to HIV and AIDS: 2024 Grantmaking. February 2026. https://www.fcaaids.org/wp-content/uploads/2026/02/FCAASupportReport24_v4-abb.pdf