Comments on Oregon PDAB draft 2026 drug review preliminary list
350 Winter Street NE
Salem, OR 97309-0405
pdab@dcbs.oregon.gov
Dear Members of the Oregon Prescription Drug Affordability Board:
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. As the Board finalizes its list of prescription drugs to review, we urge the exclusion of all HIV medications. We believe that affordability reviews of HIV medications fail to fully account for the intricacies of the existing HIV safety net, which makes lifesaving HIV treatments affordable for most people. Furthermore, we also want to highlight numerous factors in the global HIV drug ecosystem that would be difficult for a state to effectively consider.
Since the onset of the AIDS crisis in the 1980s, our community has tirelessly fought for access to effective treatments, leading to the establishment of vital safety net programs that ensure HIV care and medications remain affordable. Programs such as the Ryan White HIV/AIDS Program provide $2.5 billion annually to ensure HIV treatments and care to low-income people living with HIV[i]. The Ryan White Programs generates $2.87 billion in drug purchases through the 340B program[ii] enabling crucial wraparound services and provide care and treatment to those who cannot afford it. Additionally, drug manufacturers contribute over $1.2 billion in rebates directly to state AIDS Drug Assistance Programs-all to help with affordability of HIV drugs.[iii]
For example, Oregon’s ADAP, known as CAREAssist, operates with a diverse funding stream totaling approximately $53 million, sourced from Part B funding, rebates, and program income. This funding covers essential medications and services for people living with HIV[iv]. Further affordability is achieved through additional rebate programs, such as Medicaid drug rebates, which help reduce the financial burden on public programs.
Pharmaceutical manufacturers also play a key role, contributing billions through copay assistance, free medication programs, and global initiatives like PEPFAR, which expand access to affordable HIV treatments worldwide. While gaps in coverage remain, this robust safety net has been instrumental in ensuring people living with HIV receive the care and medications they need at an affordable rate.
Federal policies have further reinforced this safety net, helping to expand access to preventive care. For instance, the Affordable Care Act (ACA) and recommendations from the U.S. Preventive Services Task Force (USPSTF) have eliminated financial barriers by mandating that PrEP (pre-exposure prophylaxis) be available at no cost to most insured individuals. This policy ensures that those vulnerable to HIV can access lifesaving preventive treatments, complementing safety net programs and helping to reduce the spread of the virus-for free.
Affordability reviews of HIV medications are unlikely to fully capture the complexity and interdependence of safety net programs, which not only ensure affordability for patients but also sustain the broader HIV care infrastructure. While we recognize the Board’s current position to not seek upper payment limit authority, reviewing medications like Biktarvy, Descovy, and Emtricitabine-Tenofovir based on list price alone (despite their actual affordability for the vast majority of patients) could have significant unintended consequences. Such reviews risk creating systemic uncertainty for manufacturers, healthcare providers, and safety net programs that rely heavily on drug rebates to fund essential wraparound services. Ultimately, this instability could undermine the delicate balance required for continued investment in the transformative advancements our community relies on, including longer-acting treatments, preventive therapies, vaccines, and the pursuit of an eventual cure.
The impact of these advancements cannot be overstated. Antiretroviral therapy (ART) has drastically changed the prognosis and quality of life for people living with HIV. When the first highly effective ART became available in 1996, a 20-year-old newly diagnosed with HIV had a life expectancy of just 10 years. Today, thanks to modern therapies, individuals with HIV enjoy lifespans comparable to the general population, with improved tolerability and far fewer side effects. These innovations have transformed HIV from a terminal illness into a manageable chronic condition for millions.
Importantly, high out-of-pocket costs for patients often stem from systemic issues unrelated to drug pricing, such as insurer practices and pharmacy benefit manager (PBM) strategies. Policymakers should focus on addressing these barriers through targeted reforms outlined in the Board’s most recent legislative report, such as regulating PBMs and ensuring that manufacturer drug rebates directly lower patient out-of-pocket costs. These solutions can improve affordability for patients without undermining the infrastructure and progress that have revolutionized HIV care.
Thank you for your consideration of these comments. We urge the Board to exclude HIV medications from the affordability review process, given the unique safety net that makes these drugs affordable for most patients. We welcome the opportunity to serve as a resource as the Board continues its important work to advance affordable and equitable healthcare for all Oregonians. If you have any questions, please reach out to our Government Affairs Manager, Zach Lynkiewicz, at zlynkiewicz@hivhep.org.
Sincerely,
Carl E. Schmid II
Executive Director
[i] Ryan White HIV/AIDS Program Funding: FY 2015–FY 2025 appropriations by program
[ii] 2024 340B Covered Entity Purchases
[iii] 2025 National RWHA Part B ADAP Monitoring Project Annual Report