Lack of Study Volunteers May Hobble Cancer Fight  http://www.nytimes.com/2009/08/03/health/research/03trials.html?hp

I participated in a lot of studies at the Hutch.  This only required having an extra vial of blood drawn during my regular draws or, in one case, taking an approved medication to see if it worked as a prphylllactic as well as a treatment.

I was asked to participate in one trial.  I refused.  The problems with trials as they stand now is that the trial only pays for the treatment as outlined in the trial.  On the other hand, as they trial usually isn't an approved protocol (or it wouldn't be a trial) the insurance company won't pay for anything resuting.  Thus, is a trial goes South, there's no safety net to catch the patient.

I'm not about to pay for that.  My suspicion is that parental love overlooks that and is willing to move mountains for the child.  Parents will take a lot of risks to keep their children alive.  But when it comes down to making a decision for the self, well, there's a little mor caution involved.

Until they change that, the only way I'll get into a trial is is there are absolutely no alternatives left.  This really needs to be reformed.

Hello,

I really don't know how to respond to this but I wouldn't ever try a clinical trial again. My son was dx was T cell ALL and we shouldn't of put him through everything we did. He went blind from the trial and had a stroke. I really don't know what exactly a "trial" is because from what I heard was that all chemo is just a trial its just a weight and balance type of thing they really have no clue of how much to give to a person. I really wish we would of just did chemo then went to bone marrow transplant. I really didn't think they really knew what to do with my son because of his age so they just put him on a trial.