I thought it was a very interesting session, actually, with the patients’ advocates. One of the things they mentioned which I really thought was fascinating is: How do we manage the hype? Because we are very excited about these products. The media are very excited. The patients are very excited. They feel our excitement, really. But on the other hand, when you look at the hard reality of the outcome of most patients with the current licensed products within their indications, most patients will relapse and die quite quickly of their disease. Sadly, that’s where we are.
So it is very important we manage expectations of our patients, and it’s very important we don’t neglect things like palliative care. And I do worry that we as physicians really have the responsibility to help our patients ‘die well’, if that’s where they’re going to end up. And it’s very easy to neglect those aspects of their care when there’s an exciting new technology available. So I think that’s very important to get the patient voice there.
And also, another thing they raised, which I think is vital is long-term follow-up. And this has been raised also by some of the other speakers too, that short-term, these do actually look reasonably safe. There are clearly some quite significant toxicities, but the mortality rates are relatively low. But actually, we don’t know what these are going to do long term, and we are messing around, if could put it like that, with the immune system, introducing T-cell subsets that we don’t quite understand what the consequence of that is, and it is very important, particularly in patients we’ve cured to have long follow-ups so we can see what happens to those patients in the future.