“Patients have tremendous power to shape policy,” said Terry Wilcox, co-founder and chief mission officer at Patients Rising. “Washington is listening.”
For the fourth year, patient advocates from across the country stormed Capitol Hill as part of Patient Rising’s “We the Patients” Fly-In, an annual event for patients to share their stories and perspectives with federal policymakers. This year, 86 advocates from 26 states rallied in Washington, D.C. for 121 meetings with lawmakers and staff across both chambers, including the country’s top lawmaker.
The event, held June 9-11, began with an education day of speakers, panels, and Q&A sessions, breaking down complex issues like coverage denials and drug pricing. The fly-in transformed individual struggles into a unified call for a healthcare system built on accountability and access.
Jessica Baladad, a six-year cancer survivor, felt the palpable impact of their collective effort.
“From coverage denials and step therapy to the need for greater transparency in drug pricing and benefit design, patients led with lived experience, and a clear call for change and accountability,” she said. “This event proved that our stories are the most powerful tool we have for change.”
Patients Rising’s Advocates Share Their Stories with Speaker Mike Johnson
Amid ongoing negotiations with the Senate leadership and White House over the “Big Beautiful Bill,” Speaker of the House Mike Johnson took time to meet with and listen to Patients Rising’s advocates.
“When patients share our stories, we have the power to shape policy,” said Wilcox. “We’re grateful to Speaker Johnson for meeting directly with real patients and listening to our concerns.”
Jennifer and her son Rocco, who lives with Prader-Willi Syndrome, shared their patient stories and stressed the importance of innovation and access to rare disease treatments. This year, the PWS community celebrated its first drug approval, but many, including those on Medicaid waiver waitlists, still lack essential services.
Another Louisiana patient, Vickie Wilkerson, underscored the access crisis by explaining her inability to find a single dermatologist or rheumatologist in her area who accepts Medicaid. For her, the opportunity was invaluable.
“It was my privilege to speak with The Speaker,” Wilkerson said. “We all had great things to say and he really listened. As I stated, people need Medicaid but they need it working properly as intended and get the healthcare they need.”
Protecting Healthcare for All Patients Act
Patients Rising advocates pushed for targeted reforms during the Fly-In, including fixes to the 340B Drug Pricing Program, stronger measures against Medicaid fraud, and greater pharmacy benefit manager (PBM) accountability.
A top priority for patient advocates is Rep. Kat Cammack’s legislation, “Protecting Healthcare for All Patients Act.” The legislation would prohibit Quality-Adjusted Life Years, more commonly known as QALYs, in federal healthcare programs, such as Medicaid.
Rep. Kat Cammack is author of the Protecting Healthcare for All Patients Act.
The QALY is a measurement used by some policymakers, insurers, and independent researchers to assess the value of healthcare treatments. QALYs appraise a patient’s life by scoring a patient’s health for each year of a life expectancy, ranging from a score of 1 for a year of perfect health to 0 if deceased.
Patients urged lawmakers to support Cammack’s bill to stop the QALY metric from undercutting patient access to the latest and most promising treatments.
“This act stops patients from being reduced to discriminatory numbers,” said Wilcox of Patients Rising. “It’s about valuing every life equally.”
Advocates also took aim at Medicaid itself, citing an estimated $98 billion in annual waste, fraud, and abuse. They argued that reform could unlock funds to eliminate waiver waitlists and improve access for patients in need.
Real Patients Share Their Voices
Lisa Lurie, a patient advocate attending her second Patients Rising Fly-In, shared her experiences and the power of patient advocacy.
“I want people to listen, and that the stories we tell when we go to Congress will resonate,” Lurie said. “I want to remind the people we’re speaking to that they’re parents, that they’re somebody’s children. The policies they enact today are going to affect them as much as it affects all of us.”
The week culminated in a heartfelt awards ceremony at the U.S. Postal Museum, where Rep. Cammack was honored for her legislative work.
Patients also shined the spotlight on advocates, Darlene Shelton, Bil Schmidtknecht, Michele Rayes, and Bridget Dandaraw-Seritt, who were honored as Patients Rising’s 2025 Fierce Advocates.
In a poignant moment, Frank Rivera received his long-overdue 2024 Advocacy Award for his work on behalf of mental health patients, after being unable to attend last year due to health challenges. The evening held a surprise for Wilcox, too, who was stunned with a leadership award from her board.
“I was speechless,” she later wrote. “It brought home for me how incredibly blessed I am to do what I do every day.”
“We may all be heading back to our home states now, but the work continues,” Wilcox concluded. “Our advocates’ stories will echo in the halls of Congress long after they’ve gone home. They came here to be heard, and I can promise you, Washington listened.”
WATCH: Recap of the 2025 We The Patients Fly-In on Hill Day