Have Hep C, Will Travel (A Little Lie Won’t Kill You)

Most trials are international in scope, and involve several hundred or more subjects, anywhere from 5 to 15 spots assigned to each specific research clinic. No one center gets very many openings to fill, and the different criteria for each study eliminate lots of possible subjects. Some trials are blind, with one section of participants receiving placebos, while others are open label, where everyone gets actual drugs. In almost all studies, there is some randomization, with participants receiving either a smaller or larger dose, or being treated for a shorter or longer period of time. I knew I was not interested in any study where I could receive a placebo.

Trials are picky about their subjects. Especially in ground breaking areas, such as non-interferon hepatitis cures, there are always many more applicants for trials than available spots. Not to mention, there is no cost to the patient for the experimental drugs, in fact the pharmaceutical companies pay their test subjects a small stipend. The financial aspect was not a factor for me, but I am sure that for someone without insurance it would be critical.

Although I didn’t realize it in the beginning, I came to understand that you had to be cancer free for at least five years to be eligible for any of the hepatitis studies. Because of the second cryoablation that I had in April 2008, I was just short of the five year mark. And even though my kidney mass had never been biopsied or actually determined to be cancer, more than half of my medical records afterward referred to the mass as renal cell carcinoma, which I must admit is how I referred to it, pre-hepatitis C diagnosis, just because it was simpler than explaining it more carefully and it didn’t seem to matter. So I wound up blurring the truth, or more accurately, lying through my teeth. At that point I was in discussions with two clinical trial centers, one in Jacksonville and one in Baltimore, and I told both of them that I had the cryoablation in 2007, and did not mention my followup treatment. I went so far as to white out sections of my records that discussed the 2008 date, and rescan them so that they looked legitimate.

With Jacksonville, a study I was very excited about, my husband and I flew down and I went through the entire screening process. Everything was terrific and I seemed to meet all the criteria. Just as we were about to leave the screening room, the trial manager asked me to sign a release so that they could obtain all my medical records. For this particular clinic, or perhaps this particular study, that was standard procedure, but something I had not anticipated. My heart sank. Once they saw my records, they would know that I had failed to disclose the second ablation. But, I thought, perhaps they wouldn’t get the records quickly, or perhaps they wouldn’t read them, just stick them in the file.

About Karen To and Fro

Everything you didn't want to know about me!
This entry was posted in baby boomers, hepatitis c, Kidney Cancer, Memoir and tagged , . Bookmark the permalink.

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