From The Editor | October 29, 2021

Cell & Gene: The Podcast Breaks Down Patient Engagement With Novartis Gene Therapies


By Erin Harris, Editor-In-Chief, Cell & Gene
Follow Me On Twitter @ErinHarris_1


If you haven’t had the opportunity to listen to Episode 9 of Cell & Gene: The Podcast, be sure to do so, as Novartis Gene Therapies’ VP of U.S. Patient Advocacy and Government Affairs and Cell & Gene Editorial Advisory Board member, Dr. Amy Nicole Nayar, thoughtfully covers why Cell & Gene readers do what they do every single day — the patient.

Dr. Nayar and I discuss patient engagement in detail and why a patient engagement officer is a necessary role in every cell and gene therapy company. After having spent 20 years in the industry, Dr. Nayar has worked across medical, commercial access, and public affairs functions, but she is best known for her work as a patient engagement officer. As such, Dr. Nayar explains why her role is so critical to the success to cell and gene companies. She notes that working closely with patients allows cell and gene therapy companies to translate the patient’s personal journey into a better clinical experience and potentially increase their chances to provide patients an improvement in the clinical outcome. Dr. Nayar and her team help patients understand what IS cell therapy?, what IS gene therapy?, is it safe for patients and their families? She does a deep dive into the role during the episode.

She also covers what being a patient engagement officer looks like in a smaller company. The pace of cell and gene therapy is lightning fast but working in a smaller company means that the team is lean, and Dr. Nayar explains that she personally finds that invigorating, because the community of scientists, regulators, patients, etc. work well together. Further, she discusses the unique challenges that a patient engagement officer in cell and gene therapy faces. She notes that traditionally healthcare systems were set up to be population-based, and that’s the exact opposite of rare disease; she finds that cell and gene therapy patient engagement officers must harness the broader healthcare system that wasn’t really set up for rare diseases. “For example, often we find in rare disease that we must educate pediatricians, who are seeing their very first child with a given disorder and are unfamiliar with the disease state, and many of these families didn’t have a treatment option before. We need to support all stakeholders to ensure the patient received the value of transformative therapies,” says Dr. Nayar. 

In an upcoming episode of Cell & Gene: The Podcast, I will cover patient engagement and advocacy with AVROBIO’s Global Head, Patient Advocacy & Engagement Fernanda Copeland. Subscribe now so you never miss an episode.