EHA 2019 | CAR-T expectations

So the expectations around CAR-T therapy depend on who you’re talking to. So sometimes patients have an unrealistic expectation, because there have certainly been these miraculous cases where patients who were pretty much at the end of the line run out of options. And we’re really looking at a very dismal prognosis, [inaudible 00:00:28] CAR-T. And now are five or six or seven years out and disease free, and living a tremendous quality of life.

But these are really the exceptions. And certainly in CLL the results have not been dramatically positive. In fact, they’ve been a little underwhelming. So I think that there’s a little bit of hype around CAR-T, and those expectations have to be managed. But I also think it’s evolving. We’re not dealing with the first generation of CAR-Ts, we’re just dealing with the first generation that has a significant success rate. But we know that the next iteration and the next iteration are going to be better and safer with better outcomes. They’re understanding the signs, they’re doing a better job of it.

If I had a patient in front of me who was considering CAR-T therapy, what I would suggest to them is that first, one of the most important thing is that they have to have a carer involved, because there may be times that they may be just too ill to make a decision for themselves. And that carer also has to have a backup for them. So for myself, that was my wife and my adult children who backed up my wife. And in some ways, the whole process is much more difficult on the carer, because the patient can be out of it. When I was quite toxic, I was on medications, I was hallucinating, I was delusional. I didn’t know what was going on, and it was my wife who was watching me going through all of this that had to endure, make decisions on my behalf.

In fact, when I went through the procedure, Dr. Maloney, who was heading my clinical trial, made sure to talk to my wife and warn her about what would happen to me and spend special time with her so she would understand how difficult this process was. So I think the first part is to make sure that the patient has a support network, a dedicated 24/7 carer, and a backup for that carer if possible.

The other thing is to make sure that the patient knows what they’re getting in for. That this is a potentially very toxic therapy, but generally everybody gets through it. And to not oversell it, but to offer it as a potential very potent and exciting option.