ICML 2025 | CAR T Vision: incorporating the patient perspective in the pursuit of improving access to CAR-T

The CAR-T Vision project was just established this year. We actually had our very first meeting in January and in a very short order we were able to bring together a multi-stakeholder group. So, this is patient advocates, clinicians, folks that focus on policy and health technology assessment. So, this wide-ranging group of experts coming together and having a discussion about how do we actually improve access to CAR-T? What we know is in the US about two out of every 10 eligible patients with lymphoma, in Europe a little bit better three out of every 10 eligible patients actually get CAR-T. And so we’re looking at what are the limitations or the obstacles to that? How do we make sure that patients get to the best care possible, which for them may be CAR-T? 

And so this project is looking at things that we know from all of these different stakeholders are problematic. So sometimes it may be that there’s not enough clinics that have CAR-T available locally or they don’t have the staff or the logistical support to increase the number of CAR-Ts that they do. It can be a lack of information whether that’s patients not knowing about CAR-T but sometimes doctors don’t know enough about CAR-T to understand if their patient might be eligible. And it can also be just a problem with access overall, like that CAR-T hasn’t been approved in a certain country or a certain area of the world. 

And so this group is working together to one, identify the issues, which is what we have done thus far. And now we’re breaking out into working groups to really see how we can fix these problems. Now what I love about this group is the patients have a voice at the table. We are treated completely as equals with everybody else, and we have these really good, open, honest discussions about what it might be like from the doctor’s side and the problems of regulators, those people that are approving whether or not a treatment is available, the struggles they have with this kind of therapy. But from a patient, the obstacles we’re facing, does the patient have a care partner who can sit with them the whole time. Can they take that amount of time out of their life and out of their work and their caregiver as well to actually have the therapy administered? How are they feeling? Is their disease progressing really quickly? So how quickly can we get them actually into therapy? 

And so we’re looking at all of those aspects to see what we can do to optimize the process, so reduce some of those time crunches that we face, spread the access and also make sure everybody has really good information. So patients, you can make a choice. And with direction, obviously some scoping from your doctor to know if you’re actually eligible, but this may be a good choice for you. So how do we make sure you get there if that’s what you need?

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