Patient Centric Approaches for Rare and Ultra-Rare Diseases

In this episode of Healthcare Goes Digital, Lawrence Bressler, Head of Value & Market Access, Global Rare Diseases at Chiesi, sat down with Natalie Yeadon, Co-founder & CEO of Impetus Digital. Among other things, he shared how Chiesi is revolutionizing the lives of people living with rare diseases on a global scale. He also discussed key ways for life science companies to engage with patient communities, the importance of pharmaceutical companies maintaining high social and environmental standards, current market access barriers, and more.

Here is a sneak peek of our conversation:

Q: Pharma has now pivoted into an area where there’s a lot of potential research, there’s a very finite number of people across the globe that has particular disorders. How do pharmaceutical companies determine which of these myriad of rare situations, conditions, or disorders they’re going to select and start working and researching on? How does that actually even start?

A: You know it’s a good question. I’m not sure like the initial jump-in is necessarily that choice. It might be just something that you have, and in your clinic that you find that treats a rare disease. When I was at Rhythm, we were working on an obesity product that has since been approved for some rare conditions of obesity, but initially, it wasn’t necessarily going to be used for rare diseases. I think sometimes you might find that you have something that fits with a rare disease and other times it might be more choice.

Once you establish a beachhead in rare, you’re looking for things that are probably more tangential or closely aligned with what you’re in. For example, at Chiesi, we have a number of products or licenses for almost all disorders. We’re looking for the synergies of who’s treating those diseases and bringing multiple solutions in that category to the physicians. Physicians get to know you, the community gets to know you, and you build on those relationships. I think it’s a lot harder for a company to be focused in one space and to go in something completely different. It’s not that, that will never happen, and I can’t say it won’t ever happen at Chiesi, but it makes it easier if you can focus on an area, build the expertise, and then expand outward from there.

For more of our discussion, you can watch the whole Fireside Chat with Lawrence Bressler, or listen to the podcast version, below.

To check out previous Fireside Chats and to make sure that you don’t miss any future updates, subscribe to our newsletter or follow us on YouTube, LinkedIn, Twitter, Facebook or our podcast. If you enjoyed this episode, kindly leave a review on iTunes.