HIV+Hepatitis Policy Institute and the Arthritis Foundation sent a letter to PCMA raising concerns about how its members will present TrumpRx prices to insured patients. The groups urged PCMA members to clearly disclose whether TrumpRx purchases will count toward patients’ deductibles and out-of-pocket maximums, warning that a lower cash price today could ultimately result in higher costs over the course of the plan year.
Comments to CMS on their proposed rule to codify the Medicare price negotiation program
This rulemaking is the first opportunity to codify the Negotiation Program in binding regulatory text rather than annual sub-regulatory guidance, and codification is the appropriate moment to close these gaps. Patients were promised that this program would deliver meaningful affordability and access improvements, and CMS should use this rulemaking to make good on that promise through enforceable, not merely discretionary, standards. Our comments address patient engagement in the negotiation process, transparency in how patient input is used, formulary access and utilization management protections for selected drugs, and additional concerns about the negotiation methodology itself.
House testimony on FY27 funding for domestic HIV and hepatitis programs
The HIV+Hepatitis Policy Institute respectfully submits this testimony in support of increased funding for domestic HIV and hepatitis programs at the Department of Health and Human Services for FY 2027. Specifically, this testimony is in support of funding for the following initiatives, programs and divisions: Ending the HIV Epidemic Initiative – $395 million for the CDC Division of HIV/AIDS Prevention, $358.6 million for the HRSA Ryan White HIV/AIDS Program, $207.3 million for the HRSA Community Health Centers, and $52 million for the Indian Health Service; Ryan White HIV/AIDS Program – $3.13 billion; CDC Division of HIV Prevention – $822.7 million; CDC Division of Viral Hepatitis – $150 million; and the HHS Office of Infectious Disease and HIV/AIDS Policy – $7.6 million. We also support maintaining funding for CDC’s Eliminating Opioid-Related Infectious Diseases Program and Division of Adolescent and School Health; the Minority HIV/AIDS Initiative; AIDS Research at the NIH; the Title X Family Planning Program; the Teen Pregnancy Prevention Program; and the SAMHSA Hepatitis C Elimination Initiative Pilot.
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.
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.