Time Magazine April 22, 2002. The Cover reads "How Medical Testing has turned millions of us into....Human Guinea Pigs" Fortunately, Time's picture of the most horrendous offender, a Doctor McGee, looks nothing like my study Doctor - what a relief. Turns out Dr McGee "was a good surgeon and a decent man". Apparently he really believed that the study drug he was dolling out was a cure for malignant melanoma. The good Doctor didn't actually want to "run a study", but to "administer the drug" BIG DIFFERENCE. Worst yet, the university review board let him get away with numerous screw-ups. It wasn't until a nurse blew the whistle (the nurses know everything). An independent audit review found deficiencies "so severe that it is beyond the scope of this report to advise corrective actions". Here's the rub - 12 out of his 94 patients fought to keep the trial going. They loved this guy and wanted to goods. Talk about hope.
So where am I in this thinking? Given the risks of ingesting an unproven chemical for the next three years, one would think that I would have really done my due diligence on Dr. Lee (my study Doctor). And I made a minimal attempt. But really, I knew that if I liked the nurses, I was in. They remain our greatest protectors. Not the regulators, but those individuals who are doling out the pills and taking the fluids. If you get a good one (like my Lovely Lorie) you are golden.
Don't get me wrong, I know strong regulatory oversight is critical to insuring that such a large system is working. But as often as there are screw-up Doctors, there are golden nurses. I'm counting on the Lovely's of this world, we really need them. That's where my hope comes from.
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2 comments:
Julie,
I really appreciate not only your blog, but what you are doing for my husband and my son, and possibly my two beautiful grandaughters. My husband is 44 and was diagnosed with pkd about 10 years ago, my son was just confirmed about 3 weeks ago. He wanted to see if if could be a donor for his dad. Now we know. He has two baby girls and without people like you willing to do this study we would never have a chance at finding something that will help. So keep up the blog and let us know how it is going.
Again thanks from the bottom of my heart.
Never having blogged before I don't know if I'm supposed to comment on comments but geez, you sure made my morning (as did the other Julie who commented before). I hope you are hooked up with the www.pkdcure.org. All kinds of potential treatments are popping up and they monitor them closely. I was especially interested in the "just drink as much water as the Tolvaptan study participants" one - anyone can do that. Good luck with your husband, son and babies. We're almost there.
JulieB
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