As the organization that leads Heart Valve Disease Awareness Day, we have talked, written, and read about the patient experience with valve disease for many years. We have created educational resources on the basics of valve disease, researched the statistics on how many people are impacted by the disease, advocated for better access to all treatments for all patients, and read countless stories from the people and the families impacted by this serious disease. But until last week’s Patient Experience at Edwards Lifesciences, we’d never been so submerged in the patient journey. It was a privilege and an incredibly unique experience.
Every year, Edwards Lifesciences—a leading manufacturer of heart valve technology—hosts patients, families, and advocates at their global headquarters in Irvine, Calif. The campus is stunning with dozens of modern buildings, sunny skies, and smiling employees. We got to meet patients who had Edwards valves in their bodies keeping them alive, talk to the employees who have put countless hours into researching and developing these products, and even take a peek into the manufacturing facilities where teams of employees painstakingly hand sew the valves under microscopes.
We even got attempt the intricate skill of sewing a valve with a tiny needle and thread under a microscope, and we walked away with tremendous respect for the sewers who chose this as their life’s work.
Our guides—who were chosen from a long list of eager employees—shared that this is their favorite time of year at Edwards. Whether they work in Research & Development, test the products after they’re released to market, or strategize on branding and communications, this is the chance to meet and learn from the people who benefit from their work. And since each valve has a serial number, the employees who sew the valve were able to actually meet the person who ended up with it in their heart. The patients were treated like celebrities, but the gratitude flowed both ways.
It was such an honor to learn more from everyone there, and to be reminded why our work at the Alliance, and the work of our partners in the Heart Valve Disease Awareness Day campaign, is so important.
We left Irvine with very full hearts and want to thank our hosts—especially Shivani Sharma and Luz Calderon who willingly shared their time and enthusiasm with us!
Lindsay Clarke serves as the Alliance’s Senior Vice President of Health Education & Advocacy, and Katie Riley is the Alliance’s Vice President of Communications. Both lead their teams to support Heart Valve Disease Awareness Day and enhance awareness of valve disease year-round.
