They Told Her to Wait Until She Got Worse with Tiffany Westrich Robertson

Doctors told her to wait until she got worse. Tiffany Westrich-Robertson turned that experience into a mission to make sure patients help shape the decisions affecting their lives. In this episode of Building the Noise, Matt Toresco sits down with Tiffany to discuss her two-year search for a diagnosis, founding AIArthritis, and why patient experiences deserve to be treated as evidence in healthcare. ABOUT TIFFANY Tiffany is the founder of AIArthritis and a patient research leader whose work connects lived experience with research, policy, and medication access. She shares how her personal journey inspired her to help other patients find their voices and make those voices count. KEY TAKEAWAYS • The physical and emotional toll of waiting for a diagnosis. • How chronic illness can reshape your identity and career. • Why collecting patient experiences creates valuable data. • Tiffany’s perspective on prescription drug affordability boards, upper payment limits, and non-medical switching. • Why patients don’t need to be policy experts to contribute to change. WHY THIS MATTERS Knowing whether someone can afford a medication is only the beginning. Understanding why they struggle and how insurance coverage, treatment access, and life circumstances affect them is essential to finding solutions. Tiffany explains why those conversations should start with patients and give them room to share their full experiences. LEARN MORE ABOUT TIFFANY Learn about Tiffany’s work with AIArthritis and the EACH/PIC Coalition, her approach to patient-led research, and what keeps her fighting throughout this conversation. GET INVOLVED WITH EACH/PIC Patients and caregivers can explore opportunities to share their experiences with prescription drug affordability and medication access. Visit https://eachpic.org/ and select “Get Involved,” then “Patient Inclusion Council.” Subscribe to Building the Noise, like this video, and watch another episode on the channel for more conversations about patient advocacy. What is one thing you wish healthcare decision-makers understood about your experience? Share your perspective in the comments. #PatientAdvocacy #DelayedDiagnosis #PatientVoice #BuildingTheNoise #AIArthritis #EACHPIC #MedicationAccess #DrugAffordability