Our meeting lasted for several hours. The nurse practitioner briskly informed me that I had hepatitis C and advanced liver disease, cirrhosis. She did not explain what that meant in terms of prognosis. She said that I had three alternatives for treatment: telaprevir plus interferon plus ribavirin; bocevir plus interferon plus ribavirin, both regimens being medically accepted remedies for the disease, or, she went on, some unidentified clinical trial. It took her approximately an hour to describe all possible side effects of the telaprevir treatment and to discuss the mixed results I could expect in terms of cure. As a patient with cirrhosis and a Ib genotype, I was not a good candidate for a cure since perhaps only 60 percent of patients like me would see a permanent elimination of the virus. She provided no information about possible clinical trials or what experimental drugs might be available and did not appear to know anything about what new direct acting antivirals (DAA’s) might be in the pipeline, or whether they showed promise. She said that she had no idea if I would even be eligible for a trial, or if trial drugs would be better than the standard treatment. I would characterize her position as casually dismissive, as if knowing anything about experimental treatments was a waste of her time. When I said I guessed I would begin the telaprevir treatment, she nodded her head and responded that she knew I would choose that option.
When we got home that day, however, I realized I was hesitant to take any action until I found out more. I felt that I had received no guidance from the nurse practitioner, and that I could not chose any treatment without better advice. I immediately called the medical center to schedule an appointment with the gastroenterologist/hepatologist who had performed my liver biopsy and whose name was on all my hospital documents as ordering physician. To my shock and surprise, I was told that in fact that doctor was not my doctor. My “doctor” of record was the nurse practitioner. If I wanted a new patient appointment with the actual physician his first available opening was January 2013.