When my uncle was diagnosed with brain cancer, my grandfather spent hundreds of hours reading medical journals and looking for as many low-chance, high-risk studies and treatment plans as possible. He turned up many options my uncle's family had no idea about. That should not have been his job.

I'm going to bring this issue up at my next research meeting, because there are tons of studies that are starving for patients, even when the patient population is large because people just don't know about them. To hear this again, from the patient/family side of things (As opposed to other coordinators bitching about low enrollment) is disheartening.

I also have some pretty strong feelings about compassionate use regarding experimental drugs /treatment protocols. I have heard some heartbreaking stories from neurology about an Alzheimer's trial that finished not too long ago. The people who were on the actual drug, not placebo had MASSIVE increases in day to day memory function and some of them regained the ability to have a normal conversation, regained some of their old personality, and after the study concluded, they had to go back to being... not-as -human as they were while on the drug. Which in my opinion is a criminally callous move on the part of the study sponsor and the FDA. These people had a taste of being a person again, a bit of hope, and they volunteered (Or were volunteered in some cases), proved the efficacy of the drug, and then were cut off cold turkey. The coordinator who worked on the trial said that it was enough to get her to switch out of geriatric neuro.