Listen to the briefing here:

Patients Rising Weekly Update

March 20, 2026

Welcome to this week’s Patients Rising Corporate Partner Briefing. My goal is to add value to your inbox by providing a concise look at what we advanced this week and where we’re headed next.

Thank you to those of you who have accepted your invitation to the Corporate Partner Briefing Room. If you’re unable to locate your invite for entry, please let me know and I will resend it.

Also, an update on our State of the Patient Summit and Rise Awards rescheduling. We are aiming for a Senate Room reservation that can accommodate our numbers in September. They only book about three months or so out, so we are working closely with Senator Scott's office on securing the right space for us and as soon as we have that date we will announce the rescheduled date and program. 

This Week at Patients Rising

Here’s everything we published on the Insights blog and Website page updates this week                                                                                                        

$25,000 Hospital Bill in Virginia Bankruptcy | VCU Health Case New York 340B: Billions in Discounts, Patients Still Pay the Price                                                           Paying Twice for Survival: How Copay Accumulators Are Failing PatientsCopay Help Tricks: Why Insurance May Block Your Med Savings                                              Mississippi Biomarker Testing Bill PassesLast Chance to Be Heard: CMS Listening Registration Closes WednesdaySurviving Scleroderma Renal Crisis: My Journey Back to StrengthWhen Scleroderma Took My Career, I Refused to QuitAre Hospitals Meant to Help Patients Driving Them Into Medical Debt

View All Insights → [Insights LINK}

Policy & Advocacy Activity

This week marked the close of the Medicare Drug Price Negotiation sign-up period. We saw strong participation from advocates achieving the following KPIs:

• Live Virtual Event Registrations: 156 across both events

• Streams of Program: 442 program streams

• Toolkit and One-Pager Downloads: 267

We have about a dozen advocates who have said they are waiting to hear on their participation request. Some of them are connected to their disease-specific organizations for preparation and a few will work with us once they know if they were chosen. 

Learnings & 2027 Goals
Tracking end-user engagement remains challenging, but there are clear opportunities for 2027. True penetration will be evident when demand exceeds capacity — when patients are actively seeking to participate and cannot all be accommodated.

Once potential medications are identified, we recommend forming Patient Advocate Working Groups in partnership with Patients Rising and other organizations — small, committed groups of advocates prepared to engage throughout the process. We would love the opportunity to work with some of you to form one of these for Patients Rising during Q3 of this year.

Patients Rising will continue monitoring advocate participation and amplifying those experiences across our Insights Blog, State of the Patient podcast, and potentially a future Medicare Drug Price Negotiation PR Magazine publication focused on the patient perspective of participating.

There was a significant amount of strong content developed across organizations this year. As with any new issue, it takes time to reach and resonate with patients. Moving forward, the opportunity is to build on that foundation with more direct, patient-level engagement.

We continue advancing two core policy priorities:

• 340B transparency and patient benefit reform
• a federal ban on discriminatory QALY metrics

Both issues are gaining traction as we continue connecting policy to patient understanding and engagement. 

Community & Advocate Development

Our community continues to grow, now exceeding 800 members.

This week, we focused on:
• onboarding new advocates into LEAD education
• strengthening engagement through our monthly Town Hall and Lunch & Learn cadence
• continued development of the Patient Senate and state-level advocacy infrastructure

We are beginning to see stronger alignment between education, storytelling, and action.

Campaign Progress & Opportunities

340B Rebate Model (HRSA Comments)
With the comment period still active until April 20th, we are continuing outreach to encourage patient participation and letter submissions. There is opportunity to expand the comment engagement for this into a broader digital advocacy effort. We are working on a grassroots and grasstops approach, so any level of support towards digital engagement for letters would be helpful. Please reach out if you are interested.

QALY Ban Initiative
We are continuing early-stage conversations around federal legislation and evaluating pathways for introduction. This remains a strong opportunity for meaningful grassroots engagement. We have moved this action to our homepage in place of the Medicare Drug Price Negotiation program.

340B Patient Transparency Proposal
Concept development continues, with a focus on clearly demonstrating how the program is — or is not — benefiting patients at the point of care. We think a patient-driven bill is a strong play here for reform, even as an add on to a more substantive reform effort. 

If your organization is interested in engaging in any of these efforts, we welcome the conversation.

State 340B Action: New York
Our letter-writing campaign to Governor Hochul is underway, supported by two new Insights blogs this week.

Despite New York’s restrictive lobbying environment, the campaign is gaining traction, with more than 50 letters already submitted through organic sharing — an encouraging signal of patient engagement.

Medical Bankruptcy in America

This initiative continues to move forward with:
• development of state-level one-pagers
• ongoing patient story collection
• continued work toward a district-level storytelling map

We see this as a critical foundation for broader transparency and accountability efforts. For those of you who supported our 340B Dashboards and the expansion campaign, I sent out a calendar invite for an update taking place on April 15th. 

Looking Ahead

In the coming weeks:
• expanded patient stories and advocacy content
• continued growth of LEAD education and community engagement
• additional policy briefings and virtual events

We are also preparing for the launch of the State of the Patient with Terry Wilcox podcast on April 21.

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 opportunity to connect.

Yours in Advocacy,

Terry Wilcox
Co-Founder & Chief Mission Officer
Patients Rising