Patients Rising Monthly
Corporate Member Update

May 1, 2026

Welcome to this month’s Patients Rising Corporate Partner Briefing. Our goal is simple: ensure you have a clear view into where we are focused, what we are building, and where we are going.

Where We Are Right Now

Everything we're building—our campaigns, content, and community—starts from one premise:

Patients don't experience policy. They experience the consequences of it.

340B: From Patient Voice to Policy Action

We saw strong engagement in our recent HRSA comment effort, with more than 300 patients and caregivers signing onto our letter calling for greater transparency and accountability in the 340B program.

This is now moving into its next phase:

• Developing a one-page patient briefing for Congressional Health LAs
• Working to secure a direct meeting with HRSA to bring patient concerns forward
• Launching 340B dashboards and transparency tools, including data on medical debt and hospital collections.  

This work is designed to move beyond awareness—and into actionable policy conversations grounded in patient experience.

Medicare Drug Price Negotiation: What We Learned

We worked closely with patients participating in this year’s engagement process. A few clear takeaways:

• More patients are showing up to these conversations
• We now have a growing body of content and preparation tools, which will not need to be duplicated in 2027
• Patients want to engage, but we believe they need even more hands-on structure and support 

Looking ahead, our focus is on building therapy-area specific advocacy teams within our community and partnering more closely with disease organizations to ensure more patients are applying, registered and prepared to be effective in 2027. 

State Advocacy: Building Real Infrastructure

We are seeing strong momentum at the state level, particularly in:

• Missouri (transparency legislation)
• Virginia (PDAB-related advocacy)
• Louisiana, Illinois, Florida, and Michigan (growing advocate activity)

We are also launching new state-based advocacy pages to support organizing, storytelling, and engagement of our Patient Senate members.

In Illinois, advocates are actively exploring a potential Springfield Hill Day, reflecting the level of engagement we are beginning to see across states. 

We are actively working on two patient-led Opeds in Illinois on 340B from both the rural and urban perspective. 

We wanted to do a meeting in Springfield in mid-May, but due to one of our state leaders losing her Mom suddenly, we have pivoted to individual engagement by the Illinois team as well as both a rural and urban patient op-ed.  We hope to kick-off in Springfield together in 2027 or later this year during veto sessions if that would be helpful. 

Organizational Growth: Building for Scale

We have made the decision to maintain and strengthen our 501(c)(3), now operating as the:

d/b/a Patients Rising Community & Learning Center

This arm will focus on:

• Patient education
• Community development
• Disease-specific educational partnerships 

We are already seeing strong demand in this area, with active work underway in multiple therapeutic communities.

To support this growth, we are also:

• Establishing a new Executive Board structure
• Launching a Patient Advisory Council to provide ongoing input from experienced advocates

This positions us to scale both education and advocacy in a more intentional way. 

Expanding Patient Engagement

We continue to grow our community, now exceeding 800 members, with increasing participation in:

• LEAD (Legislative Education & Advocate Development)
• Town Halls and Lunch & Learns
• State-level organizing

We are beginning to see a system take hold:
education → engagement → action

What’s Ahead

In the coming months, we will focus on:

• Launching the State of the Patient podcast
• Hosting a June 4 Town Hall with PBMs from the Pharmaceutical Care Management Association (PCMA). Patients will be able to ask direct questions and from our mock version of this event last month, they have A LOT of burning questions. 
• Finalizing details in June for the State of the Patient Summit & RISE Awards, to be held on Capitol Hill in September as a single, integrated event
• Expanding advocacy training, including new courses on drug pricing and related policy issues
• Continuing to grow patient story collection and engagement, we are currently in the process of moving hundreds of stories from the PatientsRisingStories.org website to our new website. 

Thank you for your continued partnership and support.

If you would like to discuss any of these initiatives or explore ways to engage, I would welcome the conversation.

Yours in Advocacy,

Terry Wilcox
Co-Founder & Chief Patient Advocate
Patients Rising