We urge CMS to prioritize oversight of the Marketplace, which serves as an essential safety net within the country’s health insurance system and is of critical importance to people affected by HIV and other serious and chronic health conditions. We urge CCIIO to reject proposals that decrease access to care by weakening network adequacy, time and distance, and ECP standards; enforce existing rules requiring copay assistance to count towards patient cost-sharing and that covered drugs are considered EHB; and improve the tools CMS provides to regulators to detect formulary coverage that deters enrollment by people living with HIV. As the key regulator of health insurance in the United States, we urge CCIIO to ensure that Marketplace plans provide meaningful, affordable, and non-discriminatory coverage to all.
Comments to CMS Administrator Oz opposing the Guarding U.S. Medicare Against Rising Drug Costs (GUARD) model
The HIV+Hepatitis Policy Institute strongly opposes the GUARD Model because it prioritizes projected federal savings over the health and financial stability of Medicare beneficiaries. By moving forward with a framework that acknowledges multibillion-dollar cost increases for patients and relies on a retrospective monitoring system, CMS leaves those who depend on continuous, life-sustaining treatment without meaningful protection from harm. We urge CMS to withdraw this proposal and instead pursue alternative reforms that offer immediate, point-of-sale affordability without jeopardizing treatment access, destabilizing essential safety nets, or undermining the research and development necessary to reach future therapeutic advances and cures.
Letter opposing Virginia’s HB483 to create a Prescription Drug Affordability Board
While we share a commitment to addressing the high cost of prescription drugs, we have significant concerns with HB483 that creates a Prescription Drug Affordability Board (PDAB). We believe it will not translate into lower drug costs for patients and may dampen future drug development.
Comments on Oregon PDAB draft 2026 drug review preliminary list
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.
Patient Group Letter to Sec. Kennedy on ensuring patient access and affordability under TrumpRx
We joined with the Arthritis Foundation on a letter signed by 20 patient groups to HHS Secretary Robert F. Kennedy Jr. and CMS Administrator Dr. Oz regarding TrumpRx, thanking them for their efforts for lowering Rx costs, but highlighting the need to ensure that patients are aware that their costs do not count towards their insurance requirements and cost-sharing.