From The Editor | December 21, 2021

AVROBIO, Novartis Gene Therapies On Patient Advocacy


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


During episode 12 of Cell & Gene: The Podcast, I had the opportunity to talk to AVROBIO’s Global Head, Patient Advocacy & Engagement, Fernanda Copeland, about the critical need to incorporate community education and patient feedback into the development and recruitment in clinical trials in order to improve them. During our discussion, Copeland explains that patient advocacy team needs to go to where the patients already are. For example, the company often starts where the manufacturers are or where the best reimbursement opportunities exist as these are rare diseases and the standard of care is different in every country, in every province.

For patient advocacy to be successful, patient advocacy teams need to understand the setting of the specific patient in their specific geography. When it comes to support for clinical trial in the era of digital media, Copeland states that AVROBIO has been able to successfully connect the world in the right language, to the right cultural needs, in order to navigate each patient’s individual needs. “Patient advocacy, when done well, requires the company to go to the communities. It’s not a good plan when you expect the patient to come to you,” explains Copeland. “Digital ads are a great way to alert people to possibilities of care available.” Tune in to hear Copeland’s insight that will make you think differently about patient advocacy.

In episode 9 of Cell & Gene: The Podcast, Dr. Amy Nicole Nayar, VP of U.S. Patient Advocacy and Government Affairs at Novartis Gene Therapies 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. Hear for yourself what Dr. Nayar has to say about next steps in patient engagement and advocacy.

Cell & Gene: The Podcast features SMEs from CGT companies, and we discuss everything from R&D to commercialization. If you haven’t already, subscribe now so you never miss and episode.