Blogging in E minor
Usually just a bunch of silly crap.

. . . and I Choose Scylla

Maureen, the nurse who leads our Hepatitis support group, was all giddy with excitement being that the incredible Dr. Bruce Banner would be visiting with us. Dr. Banner was one of the area’s leading authorities on Hepatitis C, a cutting edge researcher and a renowned physician to the stars. Maureen was like a groupie anticipating the arrival of a Rock Deity.

            The timing could not have been better. It was known to everybody in attendance that the Food and Drug Administration was about to approve two new drugs, Boceprevir and Telaprevir. Combined with existing treatments, the drugs could greatly improve the standard of care for the stubborn hepatitis C genotype 1 virus, which previously had a 50-percent cure rate as the result of a year of grueling chemotherapy. Dr. Banner had conducted one of the clinical trials.

            In addition to being an engaging speaker with an affable personality, the esteemed Dr. Banner turned out to be every bit as knowledgeable as advertised. He revealed that Boceprevir would be approved the following day and Telaprevir was about 10 days behind. He discussed the efficacy of both drugs, the likely treatment protocols and the side effects of each. Patients would be treated with one of the two new drugs in addition to the standard therapy, which included weekly injections of interferon and daily oral doses of Ribavarin.

             Although the two drugs were of the same class – protease inhibitors, which basically functioned as viral birth control – there were some differences in treatment procedures and side effects. Boceprevir carried a higher risk of anemia and blood disorders. Telaprevir had a high incidence of various rashes which, in rare circumstances, could be deadly. About 30 percent of people who had taken it had experienced painful, burning diarrhea, “fire-rhea” as he called it. The upside to these considerable health risks was that Telaprevir would only be administered for 12 weeks, in contrast to the 24 with Boceprevir. Concurrent treatment with Interferon and Ribavarin would last 24 to 48 weeks, the shortened treatment duration being another benefit of the new drugs.

            The Good Doctor graciously answered all the questions I bombarded him with: Will patients have a choice in their treatment, or will insurance companies dictate treatment options? Is there a correlation between disease progression and successful treatment? If you are taking one protease inhibitor and it isn’t working out well, can you switch to the other?

            Just as Dr. Banner had predicted, the FDA approved Boceprevir the very next day, May 13, 2011 – Friday the 13th. Internet articles began appearing at about 5 pm. The news went relatively unnoticed by the general public; there was neither fanfare nor dancing in the streets.

            The following Monday, I made an appointment with my doctor and left a message with Maureen that I would be hoping to start treatment near the end of June. She called me back, cautioning me not to make hasty decisions about the two new drugs, but informed me that I would likely be the first person in their practice to start the new treatments. I would be the first on my block to try the new drugs!

            Telaprevir was approved on May 23, ten days later.

            I began investigating the new drugs and reviewing a variety of  literature aimed at different audiences. I was torn. The 12-week treatment duration of Telaprevir was attractive, though burning diarrhea was not remotely appealing. Both drugs had risks of anemia, as did the conventional treatment, but Boceprevir was almost guaranteed to reduce blood hemoglobin levels by three points. I had even checked with my insurance and discovered that I would be charged the same for both.

            During the seemingly protracted final approval period, I was in search of sibling-type, heroic nicknames for the new drugs, such as Romulus and Remus, or Castor and Pollux, even Tweedle Dee and Tweedle Dum. Nothing seemed to fit, however. Then one evening as I joined my support group, Maureen set up a dry erase board with treatment info of each drug listed in two columns. After being awestruck by the side effects, warnings and rigorous treatment protocols, the evasive nicknames became clear: Scylla and Charybdis.

            I chose names of monsters rather than heroes. In Greek mythology, Scylla was a giant nine-headed monster that lived in a cliff overlooking the straight between Italy and Sicily. If one sailed his ship too close to the rocks, Scylla could pluck off nine sailors at a time and eat them. Unfortunately, steering clear of the cliff would put one’s ship into the clutches of Charybdis, a whirlpool, thereby dooming the entire crew. The myth is the basis of several clichés, such as “between a rock and a hard place,’ and “come Hell or high water.” I left the meeting irritated because I had learned nothing new – nothing that helped make my decision easier.

             The next afternoon I was back at the doctor’s office with my wife and daughter for a scheduled appointment. I was a wreck. It had been a stressful week at work, and I would be taking a major exam the next morning – the equivalent of the lawyer’s Bar Exam or a doctor’s Board Exam. A Really Big Deal!

            Furthermore, the reality of the situation was beginning to set in. Up to now, the prospect of treatment had been a hypothetical concept – a subject of research and discussion – but now we were actually setting dates, selecting drugs and discussing delivery.

            After some discussion with my doctor, he called Maureen in to the room and told her I was leaning toward Boceprevir — a.k.a. Scylla, a.k.a the Friday the 13th Drug,– which was now being marketed as Victrelis for some reason. I was not a fan of fire-rhea associated with Telaprevir, and I had been following the development of the former drug longer than the other and seemed drawn to it.

            We set a July 1 start date . . . just three weeks away. My all-out battle with the Silent Killer Within was on the horizon.


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