Dr. J is the Medical director of clinical studies and it is not his job to educate the public or treat everyone who is excluded.
I have seen him extend himself and go far beyond the line of duty to help his patients, but he is not *our* doc, so to speak and what care we get comes from Gilead and his own good graces.
He saved my life and has always been available to me, even now, long after I am no longer his patient. He has no obligation and I take his help to me currently, as nothing more than a great gift.
I am very protective of him and the clinic as a whole.
I am sorry for your experience but just like I had a very silly and unethical doc at Highland, I would never ever publicly criticize him by name or at that time would I have brought the name of the hospital into it.
I believe the only time it is acceptable to trash someone is if they may be a danger to others.
Actually the bad experience was the way the Nurse (Medical Assitant?) told me that I had cirrhosis. I just wish she had let me know that the test wasn't always accurate. Once I became upset, she went and got Doctor J, and he made an effort to comfort me, but again, he also didn't mention that the test wasn't always accurate. At that point in my life, I hadn't even known that Hep C could cause cirrhosis, or that cirrhosis could be so dnagerous, I only associated it with Alcoholic cirrhosis, and I hadn't drank alcohol in over 20 yrs, so I was just so shocked, especially since I felt fairly healthy.
I was discluded from The Studies, for the second time of 2011 (once in the spring, once in the fall) for having my enzymes too elevated, to meet the requirments of both Studies, although the Dr had promised me he would get me in.
After he told me I had cirrhosis, I inquired where I could go, to Treat it. He only looked surprised, and asked, "you have Insurance"? I wasn't given any clues as to where to go from there, so I went to my PCP. They referred me to the same Gastro I had been seeing for my Hep C, for the last 20 yrs, but he told me he didn't treat Hep C, and also didn't give me a referral.
I was just surprised, because I hadn't ever had any other medical problems, and I had been very trusting of the Medical System.
If I hadn't found my Dr, I would've had to get on a waiting list at Highland Hospital, so I am very thankful that I found a Tx Doc.that treated me within a few months time period. I had called East Bay Liver Center, but they didn't accept my Insurance, and I had started to panic, when I remembered a couple friends who had been cured by my Dr.
I am glad that I took that FibroSure test, but I was just very shocked that my platelets had slipped below normal, and neither Dr J., or my PCP had bothered to tell me that this is a sign that Treatment should be started. They were very casual about the whole thing, but I sure wasn't~ I still think Dr J has done great things, in his fight against AIDS and HCV :)
Bo's "bad experience" is unrelated to Quest Clinical Trials in that *all* fibrosure tests are considered inaccurate wherever they are done.
You had asked about Fibroscan which I recently read was just approved by the FDA. It is expensive so it may take some time before it becomes a mainstream dx tool. The closest I know of is at the hospital in Edmonton, Canada, but there are like closer places.
Good luck to you.
No, I don't, but I had a good experience with my biopsy. I also had a FibroSure test that I had a BAD experience with, at Quest Clinical Trials, with Dr Lalezari....they told me that by my score, a 77, that I had cirrhosis. I went into a huge bummer, but I then had my biopsy performed, and that was a Stage 2, so I decided to take that instead~
Since then (that was 2 yrs ago) I think their FibroSure test has been improved, plus, since it's a Study, they pay you :)