Patient, Researcher, and Advocate in New York

These links contain a letter from Kay Zakariasen, a patient, and Dr. Elizabeth Kavaler, to three committees of the American Urological Association (AUA), asking them to stop all invasive treatment for a diagnosis of IC/PBS, because it is unethical, harmful and unscientific. The links above contain the full text of this letter. The urological trials of the past two decades have concluded, in the words of one of the trials, that “…no current treatments have a significant impact on symptoms with time.” This research has been hidden from patients in the archives of the National Institutes of Health (NIH), and does not appear in the new Patient Guidelines, the suggested treatment for IC/PBS. This lack of disclosure to patients of the ineffectiveness of treatment, is a breach of our legal Patients’ Rights.

Since 2004, when Dr. Elizabeth Kavaler and I (Kay Zakariasen) launched an online survey of patients diagnosed with IC/PBS, www.cystitispatientsurvey.com, we have endeavored to understand two things: first, what is the nature of the treatment which the AUA suggests that urologists offer patients diagnosed with IC/PBS, exactly, and is this treatment safe and effective for patients, and second, what diagnoses and treatments have actually improved or cured symptoms? The links you see here will connect you to the answer to our first question. We hope this information will help patients make understand the treatment they’ve already had, and to make decisions in the future.

These links were just put on the web by a recipient of a newsletter from a large patient support group in Canada: KWICSmail (kwicsmail@gmail.com) . This member of KWICS support group is the publisher of an online newspaper for Windsor, Ontario. He put our letter to the AUA on the web in two places and these are the two links; the second link includes both his story and our letter to the AUA. We have just started to tell patient support groups about our letter.

Do not fail to read the patient stories in the Addendum to our letter to the AUA. The answer to my own and Dr. Kavaler’s second question, what patients find actually does improve symptoms, all noninvasive, will be up on our survey website, within a month, hopefully sooner. Those of you who filled out the survey, and countless volunteers, helped to make this work possible. Thank you.  Kay

1. http://www.scribd.com/doc/147414544/Research-into-the-treatment-for-interstitial-cystitis-painful-bladder-syndrome

2. A link to an online, newspaper, Windsor Square, including our letter to three AUA committees: http://www.windsorsquare.ca/do-you-suffer-from-pelvic-pain