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Comment by timr | Hacker News Reader

The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.

As GP noted, most drugs don't work. To make it a bit more specific, even in phase 3, the failure rate for cancer drugs is something like 50%. And that's typically for some non-survival endpoint (assuming you even get the treatment, which is itself a coin flip).

Clinical trials are noble, admirable things to do, but too many people think of them as treatments, when they really are not. They're an experiment that you do with your body when you reach the end of the road and there are no more options.

It always makes me a little sad to hear how patients talk about trials and fight to get into them, as if being in the trial is somehow progress. Expectations are not being managed properly.

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>The bigger problem with trials is not the danger, so much as the fact that they're unlikely to do anything.

And? What is the point of this observation? Of course they are unlikely to do anything. Your other option is to do nothing and die. Nothing wrong with that if that's what people choose to do...'accept their fate' and all that. I'm not opposed to it at all, there's a certain appeal to it.

But when your wife and the mother of your two beautiful daughters is laying helpless on nature's altar you fucking move dude. You don't do nothing.

The point is exactly what I said: “doing something”, in this case, is not the same thing as “saving your loved one’s life.”

> Your other option is to do nothing and die

I really don’t want to be this blunt, but I don’t know how to say it any other way: death is not an option. When you’re at the stage of clinical trials for cancer therapies, it is the inevitable outcome. Otherwise, you wouldn’t be in the trial. Maybe it extends the inevitable, maybe it doesn’t. The odds lean heavily toward the latter. And there’s also always a cost.

I’ve lost friends and family to cancer too, and watching people you love torture themselves with ineffective (or even minimally effective) treatments is agonizing.

When it comes to clinical trials, you need to start with the cold, hard reality that you’re doing an altruistic experiment with the remaining portion of your life. There are lot of people who don’t understand that, and see trials as some kind of back-door to better treatment.

Not that long ago I went to see an acquaintance during his last time on this Earth - bladder cancer. His final time would come the next afternoon, so he was already well into the 'he can hear you but can't speak' phase. At first I felt absolutely awful for him and in general. But then thinking about it more I realized that there's nothing to really feel particularly bad about.

In not that long I'll be the one laying there in that bed, and so will everybody else that was in that room, and even on this Earth. It's just a natural part of life. He, at least, had the privilege of being able to prepare for his final moments, and getting to spend it surrounded by friends and loved ones. It's the final scene that we all will go through, one way or the other. And you know, that's about as ideal a closing act as one could hope for.

I agree. And people who have been through it frequently (e.g. doctors) have a completely different reaction to those who are going through it for the first time. But still, it's understandably a sensitive subject, and even the person most inured to death reacts differently when it's their own family (or themselves) who is dealing with it.

That said, the folks who are recruiting for clinical trials are often playing on this emotional reaction, and over-promising what can be accomplished, or simply not correcting the misperceptions of the people they are recruiting.

It's hard to recruit people into trials when you tell them with absolute clarity that there's very little chance it will benefit them personally.

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