case studies

The Best Story in 15 Years—And We Get to Break It!

Posted on February 6, 2012By Penny Allen, Editor, ICA Update When our members get the Winter 2012 issue of the ICA Update, the ICA’s quarterly magazine that just mailed, they will have reason to rejoice! No new treatment has come along for the patients with interstitial cystitis (IC) in 15 years, but that looks like it’s about to change—and we get to break the story. Not bad for a quarterly magazine! We serve patients with IC, a debilitating bladder disease that can force its sufferers to urinate 60 times a day or more and to battle knock-you-to-your knees pelvic pain. That can mean losing your job, your social life, and your sex life and living with pain that medications may not really control—or that you can’t get medications for because doctors won’t prescribe them. There are treatments that can help some patients live fairly normal lives, like our terrific patient support staffers Linda Salin and Rhonda Garrett. For many others, the treatments go only so far. But now, some drugs and devices just beginning to be tried in the clinic look like they have potential to get most patients back to feeling good—and maybe attack the roots of this disease. One, an already approved autoimmune drug—has worked extremely well outside of clinical trials. If the new trial works out, we could have a truly effective treatment and a whole new way of thinking about what causes this disease. Another treatment is based on research that the ICA funded long ago. To the clinical world, the research went dormant. But now, it’s poised to flower. A growth factor that stops the peptide discovered to destroy bladder lining will be delivered to patients’ bladders to stop the destruction—or maybe even reverse it. Cool new technology could also change patients lives. In another clinical trial, a little pretzel-shaped device that carries painkilling medication and slowly delivers it over time will be inserted into patients’ bladders. Word from very preliminary studies is that it may help patients with the worst form of the disease. We cover both the cool and the controversial—or the controversial soon to be cool. We follow up our last issue’s investigation of the use and value of marijuana as a therapy with news of a new survey study of marijuana as a treatment for our “brother” disease (chronic prostatitis) and news that a marijuana-related drug will be tested for IC soon. I am just awed that all this is coming along now and that I got to write about it. The terrific designers I work with here in Ohio translated the news into graphics that perfectly reflect the ideas. The cover of the issue—winter turning into spring, the gloomy picture turning into hope—says it all.   ... Read more