Recently, patients from the chronic disease community from across the country convened in Washington D.C. for the We the Patients Fly-In. They met with members of Congress and their staffs to advocate for several pro-patient healthcare bills that would improve access, affordability, and transparency.

On this episode, Patients Rising catches up with several advocates in the halls of Congress to bring listeners inside their meetings with lawmakers about the healthcare issues that matter to patients. Podcast producer Sarah interviews patients with rare and chronic diseases who share their stories from the fly-in. 

Dorothea Lantz, a Community Engagement Specialist for Prader-Willi Syndrome Association USA, explains how step therapy can hurt patients. Step therapy requires patients to try medications their insurers require before the ones that work best for them. She argues that rare disease patients should have their choice of prescription drugs. She also highlights how PBMs are driving up drug prices and the need for transparency to bring down costs. 

Terry talks about the requests that Patients Rising has for Congress and the organization’s goal to get ten patient advocates in every Congressional District to prepare for next year’s fly-in.

Jess Walfer, Nurse and IBD Advocate, talks about the need to regulate PBMs so they don’t drive up costs and the need for price transparency. Tami Seretti, Volunteer Patient Advocate, National Psoriasis Foundation, discusses the need for copay cost controls. They highlight how Members of Congress are empathetic to what they are going through. 

Bob Goldberg explains how he was in awe of the energy shown by the advocates at the fly-in. He highlights how lack of continuity of care is a significant problem facing patients today. 

Listen to Patients on Capital Hill