FOR IMMEDIATE RELEASE

Patients Rising Calls on HRSA to Put Patients First in 340B Program: Hundreds of Patients, Caregivers, and Advocates Submit Comment Letter Recommending Transparency and Measurable Benefits in Proposed Rebate Model

Washington, D.C. – April 21, 2026 – Patients Rising, a national patient-led advocacy organization, today announced the submission of a formal comment letter to the Health Resources and Services Administration (HRSA) in response to the agency’s Request for Information on a potential 340B Rebate Model Pilot Program.

Signed by hundreds of patient advocates and leaders representing thousands of patients and caregivers from every corner of the country, the letter delivers a clear and urgent message: patients are too often invisible in a federal drug pricing program built around their care.

“The 340B program exists because of patients’ prescriptions and treatment, yet far too many of us never know when our medications are purchased under the program or whether any savings actually reach our care,” said Terry Wilcox, founder of Patients Rising and a signatory to the letter. “We are tired of being invisible. Patients deserve transparency, accountability, and real, measurable benefits, not just hidden institutional profits.”

Key Points from the Patients Rising Comment Letter:

• Patients Remain Invisible: Many patients are never told when their medications are filled under the 340B program, how the program is intended to benefit them, or whether savings are passed on to reduce their financial burden.
• Ongoing Financial Hardship: Patients continue to face high out-of-pocket costs, aggressive billing, medical debt, collections, and in some cases bankruptcy — even after receiving care at 340B-participating hospitals and health systems.
• Clear Standard for Reform: Any rebate model or future 340B changes must be evaluated against one simple question: Does this program measurably benefit patients?
• Practical Transparency Solution: The letter highlights a simple, ready-to-implement fix — using existing pharmacy systems to notify patients at the point of sale or on their receipt when a prescription is processed under the 340B program. This can be done in real time without delaying care, while allowing timely or provisional reimbursement to covered entities for all qualifying prescriptions.

The comment letter emphasizes that reform must not come at the expense of vulnerable patients. It calls for meaningful transparency at the point of care, demonstrable patient benefit, and accountability that distinguishes genuine safety-net providers from those that do not pass savings forward to patients.

A National Patient Voice

The submission represents a broad, grassroots movement, with signatories including individual patients, caregivers, and leaders from patient advocacy organizations such as the International Cancer Advocacy Network (ICAN), Amyloidosis Foundation, Chronic Migraine Awareness, Friends of the PBC Foundation, HypoPARAthyroidism Association, Infusion Access Foundation, Pulmonary Success Circles, and many others.

“Patients do not experience healthcare policy in theory we experience it every day in access to medications, affordability, and financial stability,” the letter states. “For too long, 340B discussions have been dominated by institutional stakeholders. Patients must be informed participants, not invisible ones.”

Patients Rising will continue to engage with HRSA, Congress, and all stakeholders to ensure any changes to the 340B program prioritize real patient outcomes over institutional interests.

The full comment letter is available here: [LETTER]

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Media Contact: Patients Rising, media@patientsrising.org

About Patients Rising Patients Rising is a national, patient-led organization dedicated to improving access, affordability, and transparency in healthcare. Through advocacy, education, and direct patient engagement, Patients Rising amplifies the voices of patients and caregivers to ensure healthcare policies deliver real-world benefits where they matter most to the people who rely on the system every day. Learn more at www.patientsrising.org.