Of course, there were still a few loose ends for the Bristol Myers trial. I had to run over to my ophthalmologist’s office to retrieve a form he had signed back when I was considering the standard of care treatment which said I was an acceptable candidate, from an ocular point of view, for interferon. Even though it was a few months old, it turned out to be adequate. While interferon was not part of the study, they had a “rescue” component in the event the experimental drugs did not work, where they added interferon and ribavirin. Additionally, I needed to provide a letter from my urologist explaining the procedure he had done for the kidney mass, which I just happened to have in the wake of the Jacksonville debacle.
At this point I am about three quarters of the way through actual treatment, which consists of three pills with breakfast and three pills with dinner. For the first month I stayed in a hotel, shuttled to the clinic to have my blood drawn almost daily, and spent the rest of the day walking and writing and reading and watching old movies on television. I am now home in Vermont and fly down to Virginia weekly and then bi-weekly for another month of treatment. So far, I haven’t experienced any side effects from the drugs, and as of the 21st day of treatment the hepatitis C virus was undetectable in my blood and my liver enzymes and bilirubin were within normal range. I cried when I found out.
As I think about the past year, and my efforts to find a reasonable treatment option, I am a little bitter about the failure of all the medical professionals I saw in the last ten or fifteen years to make any effort to screen me for hepatitis, especially my primary care doctor. While I wasn’t current on the medical literature before, I now know that for many years doctors have been urged to look into the possibility of infection in baby boomers. Especially in my case, where I disclosed my previous illness, someone should have caught the disease earlier, perhaps before my liver scarring was so advanced.
On the other hand, there are far more opportunities for treatment now than existed ten years ago, when the only remedy was interferon and ribavirin. I complain about the Kafkaesque world of clinical trials, but at least there is a vigorous campaign to find an effective drug or drugs with multiple companies vying for first position in the marketplace. Even five years ago I would not have been able to access any of these cutting edge drugs. There is nothing like potential huge profits to spur invention and the big pharmaceutical corporations expect to earn billions through the development of non-interferon based antiviral drugs.