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My Body on the Line

I would love medical research to happen faster. But participating in a trial decreased my frustration with the pace because I saw firsthand just what it takes -- all the visits, all the exams, all the treatment and the mountains of data to be analyzed. By doing it, not just reading about it, I gained respect for the process.

Even so, lying on that table I still often asked myself: Is this the only way to make progress in dealing with IC?

Until 50 years ago, there was no gold standard for judging any new treatments or medications. Physicians relied instead on their powers of observation and memory: If it was common to give this or that treatment, they used it, and then watched to see if it worked. The standard of care was based on history, not testing.

But in 1946 researchers in England tested the effect of the new antibiotic streptomycin on tuberculosis. All the patients in the study received the standard of care for that time -- bed rest -- but half were also given the antibiotic. Equally important, no one working on the study knew which patients were on the drugs; the staff and the patients were doubly "blind" to the treatment and therefore could not project an outcome in either direction.

The results were striking. Fifty-one percent of those on streptomycin improved, compared with only 8 percent of those on bed rest alone.

The double-blind clinical trial rapidly became the gold standard for medical science and a standard for government approval for medications.

Beyond the science, I quickly became a big fan of clinical trials. The process, I learned firsthand, is not as dispassionate as the rules imply.

Royal Treatment

I really didn't mind the afternoons in Rochester. In fact, I looked forward to them. For once, people wanted me to talk endlessly about my condition. Instead of hiding it or being embarrassed, I could complain as much as I wanted.

For a year and a half, a team of physicians, nurses and administrators monitored my health in person, by telephone and by e-mail. I didn't take a pill or feel an ache without this team's knowing what was going on with my body. For the only time in my life, I received the health care of presidents and kings.

For example, when I tried a medication for the acute pain that comes with this condition, it gave me occasional heart palpitations. I was quickly sent for an EKG and consultation with my primary care physician. And on the next visit to Rochester, my team was all over me. Suddenly I had Dr. Mayer, Nurse Rust and the program administrator waiting in turn to take my pulse. They could have left this up to my regular doctor, but they didn't.

I also learned that I was not just a subject in one isolated clinical trial, but contributing to a wider understanding of IC. All the notes and the urine samples would also serve to fill in gaps about the natural history of IC, which in turn will point the researchers toward the next step.

"Any type of medical research is a learning experience," explained my urologist, Robert Mayer. "During clinical trials, we gather all sorts of information that is fundamental to understanding the condition, as well as the treatment."

Still, I worried that the study might end up being useless to the IC community if the results weren't positive or if the treatment only worked for a few people. I answered my concerns this way:

As health consumers, we are left with three options. You could let your doctor sort through the studies and decide what is best for you. Or you could bone up on your condition, read about the possible treatments and then weigh the evidence yourself.

Or you could jump in there and be involved.

In my case, I am not waiting for any body of evidence, but trying to produce it. This kind of participation takes not just dedication, but a certain kind of enthusiasm, even in the face of negative results.

Moving On

A recent letter just informed me that I had been given the placebo in Phase One of the study. In any case, whatever went in there hadn't reduced my symptoms a bit. Even after I received the real substance in Phase Two, there was no improvement in my bladder. This month, the study results were published in the Journal of Urology. There, I learned the treatment appeared to help 21 percent of the subjects, compared to 12 percent in the placebo group who saw improvement. So BCG may offer relief to some patients with interstitial cystitis, if not to me. Researchers, though, continue their search for a more effective treatment.

Meanwhile, I am in contact with the research group in Rochester. I miss them. Maybe all that enthusiastic participation did nothing for my particular bladder, but it did a lot for me. I was treated well, listened to, and I felt like part of the process. It gave me hope.

For that reason alone, I'd offer up my body to science any day. . . .

Meredith Small is an anthropology professor at Cornell University.

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