We were scheduled to drive down to Jacksonville to start treatment when the phone rang the day before our departure. It was the Jacksonville trial manager, informing me about the problem she had discovered with my kidney ablation and asking me for an explanation. “I forgot” was all I could come up with. Karl, who had been urging me to disclose everything honestly from the beginning, looked at me and was kind enough not to say “I told you so”. The Jacksonville clinic told me that the only way I could enter their study was if I obtained a letter from my urologist saying that the kidney mass was not cancerous. Of course, he couldn’t say that. He wrote a very nice letter, but it wasn’t good enough. I was not allowed into the study.
Baltimore stopped returning my calls. I think they figured out the web of deceit and just did not want to go to the trouble of confronting me.
By the end of November, when I consulted again with the Florida specialist, I was feeling increasingly anxious and frustrated and desperate to start treatment, any treatment. He immediately reassured me that finding a clinical trial remained my best option, but did not have specific suggestions about where to find a trial that would accept me. All he could promise was that if I still needed his help in April, he might be able to find me a slot. It was clear, however, that his own regular patients were lined up around the block waiting for a trial, and that no matter how well connected I was I would have to wait my turn.
I redoubled my efforts on the computer, this time disclosing the kidney ablation up front. Amazingly, most of the centers accepted the situation, concluding that since I had never actually been diagnosed with cancer I was not disqualified. Karl rescanned all my medical records (non-whited out versions) so that I could easily email them to any potential center.
I developed a new search technique. Since all the trials I contacted through the government website were closed by the time I got to them, I started contacting the clinics where it stated “not yet recruiting”. Many times I just hit another dead end, but several places seemed interested and when there was some interest, I was able to quickly email my records and follow up by phone afterward to see if I met the study criteria. Often, however, the websites only gave the name of the city where the test site was, not the name of the clinic. Gilead was good about furnishing the specific locations within the city, but not every company was so cooperative. Abbott never returned my phone calls and several other companies would only give the information to my doctor. Since I didn’t have a doctor, really (I had several but nobody that seemed suitable for this particular job), I gave up on that tactic. I started doing google searches for gastroenterologists and hepatologists and research centers, hospitals and clinics and anywhere that might be a potential site for a trial, kind of like closing my eyes and sticking a pin in a map. Florida and Virginia were particularly fertile areas.
When I found something promising, I would call, ask for the clinical research department, and inquire about hepatitis C trials. Almost without fail, people were kind. Some spent a long time with me on the phone, discussing my situation and exploring options. A few actually had a clinical trial coming soon, and with those I was able to send my records and get on their list. A list! I was finally getting my timing right.