On this episode of the podcast, Terry and Bob discuss how policymakers need to hear directly from the patient community to get a proper perspective of their challenges. They highlight the opportunity for patients to make their voices heard by decision-makers on Capitol Hill by joining the Patients Rising 2022 We The Patients Fly-In on June 14th and 15th in Washington, D.C. This event provides the opportunity to meet fellow patient advocates and tell policymakers about the most significant issues they face. 

They discuss the massive markups on medications by hospitals that routinely bankrupt Americans. A Johns Hopkins study finds that, on average, hospitals markup their prices by seven times their cost of care. These ridiculous prices cause enormous pain for ordinary people.  

Terry and Bob take the opportunity to share their own patient advocacy stories. Terry explains how she left a career as a producer to tour the country and interview cancer patients about the hurdles they face and their barriers to access. These patient stories inspired her to become a patient advocate. Bob had been doing health policy work for decades and continually came across patients who were victimized by the U.S. healthcare system. He devoted himself to tearing down barriers preventing patient access to medication.

Terry interviews fibromyalgia patient advocate Melissa Talwar, executive director of the Support Fibromyalgia Network, who underscores the importance of patient advocacy and explains how ordinary patients can embark on their own advocacy journey. Melissa discusses how she felt defeated by the healthcare system. But by sharing her experience, she was able to gain a voice and feel heard. She points out the problems of medical debt and how she’d love to know prices in advance. She highlights how she got hit with surprise bills for her tests. Patient advocacy is all about getting started. She encourages patients to look for people to help you and advocate for you in your journey. 

Field correspondent Kate Pecora takes listeners international with her conversation with Canadian Megan Staley, who gives listeners a look into her life with Behcet’s and endometriosis as well as other rare diseases. Megan is currently scheduled to get her colon removed, and she’s had to stop working and move home with her parents. She explains how she has good days and bad. Megan reveals how Canada’s single-payer healthcare system has created significant delays for the procedures she needs. She is forced to wait a year or two before she can get treatment. Even basic bloodwork is a month wait.

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