2002 ICA Milestones

In Mid-January, the ICA attended the Annual Meeting of the National Kidney and Urologic Diseases Information Clearinghouse (NKUDIC) Coordinating Panel in Washington, DC. And presented ICA information that included a discussion of the ICA's accomplishments over the past year, goals for 2002, and samples of new ICA publications.

On January 30th, the ICA presented live testimony on behalf of IC patients at the Food & Drug Administration (FDA) hearing on the need for use of opioid analgesics in the treatment of chronic pain.

The February 1st issue of Woman’s Day magazine featured a very informative article entitled, "The Diseases Doctors Miss Most," by Margaret Littman. IC is covered in the article, as is heart disease, rheumatic disease (such as fibromyalgia and lupus), thyroid disease, depression, ovarian cancer, endometriosis, irritable bowel syndrome, polycystic ovary disease, and Lyme disease.

ICA Medical Advisory Board member, Robert Moldwin, MD, spoke at the American Physical Therapy Association’s Annual Meeting, presenting information on interstitial cystitis and pelvic pain.

The March issue of Marie Claire magazine featured the article, "When Sex Hurts," which included information about IC and the ICA.

The March 2002 edition of the journal, Clinical Obstetrics and Gynecology, was exclusively devoted to IC, pelvic pain, and overactive bladder. ICA Board member, Dr. Grannum Sant, and Peter Sand, MD, were the guest editors for this special issue. Several ICA Medical Advisory Board members and others involved in IC research and treatment contributed articles.

On April 8th and 9th, the ICA attended the first-ever NIH Chronic Pelvic Pain Conference. ICA Founder & President, Dr. Vicki Ratner, joined researchers, clinicians and other healthcare practitioners from across the country who are involved in all aspects of pelvic pain, to attend this conference entitled, "Chronic Pelvic Pain: Pathogenic Mechanisms, Treatment Innovations, and Research Implications." ICA Medical Advisory Board member, Grannum Sant, MD, presented an excellent overview of IC at this Conference.

The first-ever Japanese Symposium on IC was held in Japan on April 19th. The Society of Interstitial Cystitis of Japan (SICJ), led by IC patient, Ms. Masako Katsurada, organized this first-ever Japanese symposium on IC. The Symposium, entitled "Interstitial Cystitis – from Epidemiology to Treatment," was satellite broadcast during the 90th Annual Meeting of the Japanese Urological Association, held on April 19th in Tokyo, Japan. Dr. Tomohiro Ueda and his colleagues, as well as Ms. Katsurada, were instrumental in the planning and organization of this very special event. Over the years, the ICA has established a close working relationship with Dr. Ueda and his colleagues, and had the opportunity to meet with them in person at the 2000 ICA-NIDDK IC International Research Symposium.

Also in May, Ann Chesnut, ICA Director of Communications, flew to Rome to promote the ICA’s work and present IC information at the First National Congress on Interstitial Cystitis Syndrome & Rare Diseases, sponsored by A.I.C.I., the Italian counterpart of the ICA. She was joined in Rome by ICA Medical Advisory Board members, Robert Moldwin, MD and Kristine Whitmore, MD. Also attending were several representatives of major European IC nonprofit organizations.

Also this spring, The Society of Urologic Nurses and Associates (SUNA) began to offer an on-line IC Continuing Education course for two credit hours. Part two of the course, "Clinical Conversations," features ICA staff member, Beth Getz, RN, who was interviewed for this course.

A Letter to the Editor, written by ICA President & Founder, Dr. Vicki Ratner, was published by American Family Physician (May 1, 2002 edition). Dr. Ratner submitted a one-page letter to American Family Physician in response to an article on IC entitled, "Interstitial cystitis: Urgency and Frequency Syndrome," by Julius Metts, MD, published in the October 1, 2001 issue of the journal. Dr. Ratner’s letter urges physicians to recognize and treat the pain of IC.

The May 2002 issue of Self Healing, the monthly newsletter created by Dr. Andrew Weil, featured IC. The article that covered IC, entitled, "Gotta Go: Natural Help for Urinary Problems," offered Dr. Weil’s advice on treating urinary tract infections, incontinence and IC.

The American Urological Association’s Centennial Meeting was held in Orlando, Florida, May 25th through the 30th. ICA Medical Advisory Board (MAB) member, Dr. Robert Moldwin and his colleagues presented a three and one-half hour course on IC and pelvic pain. Vicki Ratner, MD, presented the opening remarks for Dr. Moldwin’s course. Also, IC MAB member, Dr. C. Lowell Parsons, presented his annual update on IC. And, there was a very engaging IC poster session, which featured several new and innovative IC-related research projects. ICA staff members, Linda Salin and Carolyn Coogan, and ICA National Patient Support Advocate, Iliana Brockman, worked diligently behind the ICA’s nicely located Exhibition Booth, keeping very busy distributing packets of IC information to urologists from around the world.

ICA National Patient Support Advocate, Mary Ellen Altieri, RN, spoke about IC to nurses and other healthcare professionals attending the Society of Urologic Nurses and Associates (SUNA) Annual Meeting, which was held May 23rd – 28th in Orlando, FL.

ICA Medical Advisory Board member, Robert Moldwin, MD, presented an IC lecture to physicians and other healthcare professionals at the American College Health Association (ACHA) Annual Meeting in Maryland on May 30th. The ACHA is a professional association that is the principal advocate and leadership organization for college and university healthcare.

The Second Annual ICA Capitol Hill Walk took place June 23rd and June 24th, in Washington, DC. Nearly twenty ICA representatives from around the country joined ICA staff in Washington for this very important legislative campaign. One of the major goals of this Walk is to convey to members of Congress the importance of increasing IC research funding through the National Institutes of Health (NIH)

ICA Medical Advisory Board member, Dr. David Kaufman, was a columnist for the ABC news on-line featured column, Doctor’s Diaries. In his article, entitled Unexpected Expert, Dr. Kaufman tells the engaging story of how he first got involved in treating IC patients, when he originally began his career as a male infertility specialist.

The June issue of Bottom Line/Health included a section on IC in the feature article entitled, "Five Diseases that Doctors Often Miss," by John J. Gallin, MD, of the National Institutes of Health Clinical Center.

The Journal of the American Medical Women’s Association (JAMWA) accepted the ICA’s website for their Women’s Health Library Link, and in addition, links directly to four articles from our site. JAMWA Women’s Health Link Library includes over 300 hundred organizations and more than 1,000 links relevant to women’s health.

The June issue of Environmental Nutrition featured a Question & Answer section about IC in their Ask EN column. The article, entitled, "Misunderstood Bladder Disease Symptoms may be Linked to Diet," discusses dietary management of IC, including the use of Prelief. ICA Founder and President, Dr. Vicki Ratner, is also quoted in the article.

More Magazine, a subsidiary of Ladies’ Home Journal, featured an article about IC in their July Ask the Expert section. This column featured ICA Founder & President, Vicki Ratner, MD, who addressed question about detecting the symptoms of IC.

Missouri native and Long-time ICA National Patient Support Advocate, Betty Hinken was mentioned twice during the month of July in the Kansas City Star. Betty’s mission has always been to get IC an the ICA publicized as much as possible, and she has done a remarkable job over the years. The July 14th "Indulgences" column described Betty’s "indulgence" as travel, and explained how she takes cruises frequently because she can request the menu she needs and enjoy all shipboard activities and entertainment while still comfortably close to her cabin amenities. On Jul 29th, a letter from Betty was published "to provide your readers more information about interstitial cystitis." That letter closed with a description of the ICA.

Dr. Vicki Ratner, attended the IASP (International Association for the Study of Pain) Conference in San Diego, CA (August 2002). This conference was a specific new effort for the ICA designed to help us network and establish relationships with healthcare practitioners with the potential to impact many suffering with IC. Dr. Ratner presented a talk on IC to the Pain of Urogenital Origin Special Interest Group.

The September, 2002, Prevention Magazine’s "Mailbag" featured a letter regarding using cranberry juice to prevent & treat UTIs. The writer reminded Prevention that for people with chronic prostate problems or IC, cranberry juice can exacerbate symptoms. Prevention responded with a supportive paragraph that mentioned the ICA and quoted Dr. Vicki Ratner.

After more than two years of intense advocacy efforts by the ICA, the Social Security Administration (SSA) announced on November 5, 2002, an official Policy Interpretation Ruling for IC. By issuing this Ruling, the SSA is taking unprecedented action with respect to IC by proactively providing binding technical guidance to all of its adjudicators across the country on how to process IC-specific disability claims.

Dr. Paul Donohue, nationally syndicated health columnist, featured IC and the ICA during the week of November 11, 2002. The ICA received hundreds of calls on its toll-free number during the week of the column's appearance in newspapers nationwide. Also, the ICA's website hits doubled in a 24-hour period, thanks to the publication of this column. All callers were sent free information on IC.

Also this fall, the NIH announced the allocation of $5 million for future IC basic science research. An RFA (request for applications) was issued in November of 2002. This RFA, which is a direct result of the ICA’s intensive 2002 advocacy campaign, will distribute $5 million towards IC basic science research in 2003, and will fund approximately 20 to 25 new grants in response to this RFA.

Another direct result of our advocacy efforts resulted in the NIH IC Clinical Trials Group and Ancillary Studies receiving continued funding. The NIH has announced that $3.2 million will be provided for the continuation of the IC Clinical Trials Group [ICCTG --- now known as the Interstitial Cystitis Clinical Research Network (ICCRN)], which was first begun in 1997. This cooperative Group will continue to plan, direct and conduct clinical trials and ancillary studies in patients with IC.

The NIH Report, "Overcoming Bladder Disease: A Strategic Plan for Research," was Published in November. The Bladder Research Progress Review Group (BRPRG) was responsible for creating the first-ever National Institute of Diabetes, Digestive and Kidney Diseases (NIDDK) report, Overcoming Bladder Disease: A Strategic Plan for Research, which provides detailed descriptions of the current state of numerous bladder diseases and the future research directions that should be taken. Over the past year Vicki Ratner, MD, Philip Hanno, MD and Susan Keay, MD, PhD, have worked diligently to co-author the IC section of this report. Co-chairs of the executive committee were Monica Liebert, PhD, Director of Research, American Urological Association and Linda Shortliffe, MD, Chairperson of Department of Urology, Stanford University. This report is made available to Congressional representatives so that they can better understand the impact that bladder diseases are having on the American public, and, thus, direct research funding towards these disorders. This publication is now available online, in PDF format (click here).

The NIH has approved an upcoming IC scientific symposium, co-sponsored by the NIDDK and the ICA, which will be held October 30th through November 1st, 2003 in Washington, DC. This scientific symposium will be entitled, "Insights into Interstitial Cystitis: A Basic and Clinical Science Symposium." The ICA plans to hold its 20th Anniversary National Patient Meeting directly following the scientific symposium, at the same location.

Dr. Ratner is also serving as a planning committee member for the upcoming International Consultation on Interstitial Cystitis Japan, which will be held in Kyoto (March 2003), and attended a planning committee meeting in November.

In 2002, Dr. Ratner continued her work on several councils at the NIH. She is fulfilling her four-year term of the NIDDK Advisory Council (2000 - 2002). Among its responsibilities, the Advisory Council makes recommendations on applications for research and training grants. The Council consists of eighteen appointed members, as well as a group of non-voting members representing various government agencies. The Council meets four times a year. She is also a member of the NIDDK Clinical Trials Group committee, and attended their meetings throughout 2002.

Part of our ongoing community education campaign includes a book distribution project. ICA Volunteer National Patient Support Advocates distributed copies of The Interstitial Cystitis Survival Guide, written by IC researcher and ICA Medical Advisory Board member, Dr. Robert Moldwin, to their local libraries, public health departments and community health centers. Each book’s inside plate indicates that it was donated by the ICA through an educational grant from The Medtronic Foundation.

During 2002 the ICA designed, produced and distributed a new outreach tool, the ICA Prescription Pad, for newly diagnosed IC patients and patients perhaps not already in contact with the ICA. Distributed through treating physicians, the ICA Prescription Pad approximates a conventional prescription pad, but contains information about ICA programs and services as well as contact information. Doctors are encouraged to tear a sheet off their pad and present it to patients so that they can contact the ICA as early as possible after diagnosis. The pads have been packaged and sent to healthcare providers on the ICA’s Physician Registry and the ICA Physician Perspectives newsletter subscriber list. Remaining pads are being included in our Physician Education Kits.

The ICA’s website, which now receives an unprecedented 1.4 million hits per month, continued to be expanded and refined. 2002 innovations included new Research and Clinical Trials sections; an updated International section, which now includes ICA documents translated into French, Italian, Japanese and Spanish; expanded versions of Café ICA, our online monthly news digest; new surveys and a Survey section; and more detailed coverage of breaking news.

The ICA also updated its Fact Sheet series, which now includes 17 informative Fact Sheets on a wide variety of IC-related topics. Also, a new, four-page, comprehensive ICA Treatment Guidelines Fact Sheet was developed and includes sections on etiology, treatments, experimental therapies and clinical trials. And, a new ICA Programs & Services document was developed, which describes in detail all of the areas in which the ICA is actively helping to make a difference in IC patients’ lives. All of these informative documents are available via the ICA’s website.