In early January, the ICA made a first-ever appearance at the 8th International Association for Chronic Fatigue Syndrome (IACFS, formerly the AACFS) Conference on Chronic Fatigue Syndrome, Fibromyalgia and other Related Illnesses in Fort Lauderdale, Florida. There were two back-to-back events: a two-day patient event and a three-day medical professional event. The ICA was an exhibitor for both of these programs thanks to support from our CDC cooperative agreement. The ICA was represented by Ann Chesnut and Linda Salin.
In February, the ICA continued its medical professional education outreach efforts at the American Academy of Pain Management (AAPM) meeting in New Orleans. Linda Salin and Fulfillment Coordinator Carolyn Coogan staffed the ICA's booth, and AAPM President B. Todd Sitzman, MD, made a point of introducing himself to Linda, asking the ICA to be a liaison between his office and people with IC.
In mid-February ICA Founder and President Vicki Ratner, MD, and key ICA staff, Board, and Medical Advisory Board members traveled to Washington, DC, for an Association of Reproductive Health Professionals (ARHP) and ICA- sponsored conference, the Definition Meeting of Interstitial Cystitis/Painful Bladder Syndrome Experts, to discuss the proposed name change of IC to bladder pain syndrome. The group produced a White Paper, which was published in its entirety later in 2007 in the ICA Update.
Throughout 2007, the ICA and ARHP continued to collaborate on cooperative projects. In the fall, the ICA and ARHP launched a joint educational program entitled Screening, Treatment, and Management of IC/PBS (Interstitial Cystitis/Painful Bladder Syndrome): A Medical Education Program for Health Care Providers and their Patients. This comprehensive program offers CME modules and associated activities and materials for targeted practitioners whose female and male patients suffer from the symptoms of this little understood condition. Educational offerings have been developed for healthcare providers (physicians, nurse practitioners, physician assistants, nurse midwives, pharmacists, and other professionals) and patients to help better recognize and treat IC/PBS. Program components include the February, 2007, Definition Meeting of Interstitial Cystitis/Painful Bladder Syndrome Experts; a comprehensive Power Point slide module with talking points; 10 national and regional society meeting visiting faculty sessions; three webinars; an issue of ARHP's CME monograph, Clinical Proceedings devoted exclusively to IC; an IC issue of ARHP's Quick Reference Guide for clinicians; and Spanish and English patient education brochures produced by the ICA. The project has been made possible through an independent educational grant from Ortho Women's Health and Urology.
Our quarterly online and print publication for healthcare providers, ICA Professional Perspectives, was redesigned and viewed by thousands online. It was also distributed during 2007 at professional medical education meetings to help to keep the medical community knowledgeable about the latest IC treatments, research, news, and events.
The ICA announced the first in a series of online ICA medical education tools to assist healthcare professionals in becoming familiar with all aspects of IC. This presentation, Interstitial Cystitis: What Healthcare Providers Need to Know, is designed to further educate the nursing community about IC and was underwritten by a generous educational grant from The Medtronic Foundation.
In mid-March, as part of our awareness campaign, funded through a multi-year cooperative agreement with the CDC to help fund the expansion of our ongoing public awareness efforts, ICA Founder and President Dr. Vicki Ratner, ICA Medical Advisory Board member Robert Moldwin, MD, ICA Board member and National Patient Support Advocate Rhonda Garrett, and ICA Consultant Libby Mullin, traveled to New York City, where they conducted a media tour with senior health magazine editors, feature writers, and publishers. This was the first of a number of events planned to connect with the media around the country in hopes that coverage of IC will grow. These media-related efforts are important because, when the public-at-large and the medical community begin to recognize IC as both prevalent and debilitating, there will likely be more funding allocated to research, along with more understanding and better treatment for IC patients from medical professionals.
Also in March, Dr. Ratner and Ann Chesnut traveled to Kyoto, Japan, where they were invited guests of the Second International Consultation on Interstitial Cystitis-Japan (ICICJ), attended by more than two hundred IC researchers and clinicians from Asia, Europe, and the US. While there, Dr. Ratner had the opportunity to speak at the scientific meeting, and the ICA also met with the Japanese IC patient organization-the Comfortable Urology Network of Japan-with an IC presentation and a Q & A session.
The ICA represented IC at the March Annual Bladder and Bowel Symposium of the Society for Urologic Nurses and Associates (SUNA) with generous funding from The Medtronic Foundation. The ICA also attended the National Kidney and Urologic Diseases Clearinghouse (NKUDIC) Annual Meeting in Bethesda, MD, an opportunity for patient organizations and government representatives to network and share findings.
The ICA was represented at the American Urological Association (AUA) Annual Meeting by several ICA staff and Medical Advisory Board members. More IC courses were offered than ever before to help teach urologists how to treat IC and related conditions. ICA Founder and President Vicki Ratner, MD, was featured in the William P. Didusch Center for Urologic History's Women Healers exhibit.
In June the Massachusetts Osteopathic Society, whose motto is Maintaining a Difference to Make a Difference, held its annual continuing medical education meeting in Boston. The ICA was invited to exhibit at this event by Lucette Nadle, DO, who is the president of the Society and a friend of Molly Glidden, the active, longtime leader of the Natick/Metrowest IC Support Group. The ICA's attendance at the event was part of the ongoing multi-year IC outreach program made possible by our cooperative agreement with the CDC. One key aspect of this program is to reach out to medical specialties beyond urology with IC diagnostic and treatment educational materials. Ann Chesnut represented the ICA at this meeting.
ICA Medical Advisory Board member Robert Moldwin, MD, became the Director of the Urological Pelvic Pain Center at the Arthur Smith Institute for Urology. The Smith Institute is part of the North Shore-Long Island Jewish Health System's Center for Advanced Medicine. The new Urological Pelvic Pain Center specializes in the treatment of IC, pelvic floor dysfunction, vulvodynia, chronic prostatitis, and chronic testicular pain. It is one of the few academic centers in the world that provides specialized care in these areas.
Ortho-McNeil Pharmaceutical, Inc., the manufacturers of Elmiron, the only FDA-approved oral treatment for IC, produced a short medical education film in Kernersville, North Carolina, that will be used to educate medical professionals about Elmiron and IC. ICA Board member and ICA Medical Advisory Board member, Robert Evans, MD, is featured in the film.
The ICA made a first-ever appearance at the American Urogynecologic Society's (AUGS) 28th Annual Meeting, September 27th-29th , in Hollywood, Florida. Some 900 attendees from the subspecialty known as urogynecology visited the exhibit hall, where the ICA provided up-to-date treatment, diagnostic, and support information on IC. ICA Medical Advisory Board members Kristene Whitmore, MD, Toby Chai, MD, and Diane Newman, RN, MSN, were in attendance. The ICA's cooperative agreement with the CDC helped to fund this outreach effort. The ICA was represented at this meeting by Ann Chesnut and Linda Salin.
The Society of Urologic Nurses and Associates (SUNA) celebrated the unique skills and contributions of urology nurses and associates during Urology Nurses and Associates Week, November 1st-7th. Just prior to the week-long celebration, five hundred urologic nurses, technicians, medical assistants, physicians, physician assistants, and industry representatives convened in Phoenix, Arizona, for SUNA's 38th Annual Conference, in mid-October. The ICA was on hand at this conference, maintaining an information booth, distributing educational materials, and answering questions from participants who stopped by the booth for a visit. Carolyn Coogan and Linda Salin represented the ICA at this event. Thanks to The Medtronic Foundation for supporting the ICA's attendance there.
At the American Medical Student Association (AMSA) Regional Conference in Portland, Maine, from November 9th-11th, IC patient and nurse, Risa Cohen, RN, presented a breakout session entitled Diagnosis and Treatment of Interstitial Cystitis. The weekend conference, People Treating People, targeting both medical and pre-medical students, was hosted by The University of New England College of Osteopathic Medicine. According to Ms. Cohen, this was the very first time that an AMSA event was hosted by an osteopathy program and the first time that IC was on the agenda. The ICA supplied Risa with a copy of the ICA Healthcare Professional Power Point presentation and a number of printed materials to hand out. "I was thrilled to represent the ICA and cannot thank you enough for all the valuable information I was able to share," said Risa. "I truly enjoy educating others in any way possible about IC and am a very comfortable public speaker. I can be available to you at any time!"
In January the ICA publicly addressed the efforts of the European Society for the Study of IC/PBS (ESSIC) to replace the term "interstitial cystitis" with "bladder pain syndrome" and revamp the current diagnostic criteria. The ICA expressed official concern over this proposal and, working with the Association of Reproductive Health Professionals (ARHP) in an educational partnership that was sponsored by Ortho McNeil, convened a February meeting of IC experts to review ESSIC's conclusions and take into serious consideration the very deep concerns of many members of the IC patient community. In addition, the ICA asked that the NIDDK help to foster the dialogue and process which will lead to the development of a new research definition of IC to clarify the investigative questions and ensure that the research results are comparable and therefore, more meaningful.
The ICA's 7th Annual Capitol Hill Walk took place during the first week in June. People with IC and their loved ones, ICA Board members, and ICA staff traveled from around the country to Washington, DC, to attend this always successful and enlightening event that has become a tradition in the ICA. Participants met personally with their Congressional Representatives and/or staff members to emphasize the importance of government-funded IC research and awareness efforts.
Once again in June, ICA member Lucy Lehner, RN, along with her son, Chase, both of Marion, Ohio, cycled more than 400 miles in the Great Ohio Bicycle Adventure (GOBA). Lucy rode all the way across the state of Ohio to help to raise funds for the many efforts of the ICA. Our thanks to Lucy for her tireless dedication!
In February the ICA announced an exciting new complementary and alternative therapies research project at the UCLA Schools of Public Health and Medicine. PROCAIM, which stands for People-Reported Outcomes from Complementary, Alternative, and Integrative Medicine, will collect a wide range of information directly from patients using standardized questionnaires that address changes over time in symptom severity, spirituality, optimism/ pessimism, mood, stress and coping skills, and quality of life. It will also serve as an information resource for patients and participants in health-enhancement activities.
Also in February, ICA Founder and President Dr. Vicki Ratner traveled to Santa Monica, California, as an appointed committee member of the NIH Interstitial Cystitis Clinical Research Network (ICCRN). This government group was created to help determine which medications may be most promising for future IC treatments. The ICCRN meeting in California was followed by a trip to meet with Allergan Pharmaceuticals (Irvine, CA), a company interested in the development of innovative treatments for IC.
In March, as a member of the oversight committee, Dr. Ratner attended the RAND Interstitial Cystitis Epidemiology (RICE) study meeting held in Washington, DC. This was the second year of an important NIH-funded, five-year national IC epidemiology study. In addition, Dr. Ratner and ICA Director of Medical Communications Lucretia (Creda) Perilli continued to work in conjunction with the University of Chicago's National Organization for Research (NORC) on the ICA's own Measurements and Evaluation of Trends Relevant to Interstitial Cystitis (METRIC) epidemiology survey. Findings of this study have been analyzed and prepared for publication. The first poster from this study was presented in November 2007 at the American Public Health Association's (APHA) 135th Annual Meeting and Exposition at the Washington, DC Convention Center.
In the spring, the ICA announced that the ICCRN had launched important studies of two new potential IC treatments, mycophenolate mofetil (CellCept) and physical therapy. The CellCept study aimed to investigate the safety and effectiveness of this immunosuppressant drug-which, in combination with other drugs, helps to prevent the rejection of the transplanted organs, such as kidneys, livers, and hearts-to help IC patients who have severe IC that other treatments haven't helped. [Unfortunately, results were disappointing and the study was discontinued.] The Physical Therapy study aimed to look at two forms of physical therapy as treatments for IC/PBS and CP/CPPS and find out if symptoms improve and if the therapy is safe and tolerable.
Griffin P. Rodgers, MD, became the new director of the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH), effective April 1st. Dr. Rodgers, who was appointed Deputy Director of the NIDDK in January 2001, was Acting Director of the NIDDK and also served as chief of the NIDDK's Clinical and Molecular Hematology Branch, which he had headed since 1998. As the new Director of the NIDDK, Dr. Rodgers oversees an annual budget of $1.8 billion and a staff of 650 scientists, physician-scientists, and administrators.
A May press release indicated that bladder, prostate, and other urinary tract diseases cost Americans nearly $11 billion a year, according to report from the NIH. Medicare's share exceeded $5.4 billion. Five years in the making, the report entitled Urologic Diseases in America stitched together a patchwork of reliable data, both new and previously published, revealing numbers of people affected, treatment patterns and economic cost. IC/PBS was tenth overall with an estimated annual cost of $65.9 million.
On September 19th the NIDDK, along with several other NIH institutes and offices, announced that it will be committing up to a total of $7.5 million dollars per year starting in the summer of 2008 for a five-year project to study IC and related conditions. This program, the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) Research Network, is designed to advance the understanding of urologic chronic pelvic pain syndromes associated with the bladder (i.e., interstitial cystitis/painful bladder syndrome, IC/PBS) and the prostate gland (i.e., chronic prostatitis/chronic pelvic pain syndrome, CP/CPPS).
The MAPP Research Network will conduct multidisciplinary, collaborative, multi-site, basic, translational, and clinical research in this relatively uncharted area. An important focus of the MAPP Network will be investigation of the biologic and behavioral relationships between IC/PBS and CP/CPPS and other frequently related symptom-based conditions. Related chronic pain syndromes of primary interest of the MAPP project are: fibromyalgia, irritable bowel syndrome (IBS), and chronic fatigue syndrome. Vulvodynia and migraine headache may also be studied if adequate scientific justification is provided.
The January 8th edition of the Winnipeg Free Press in Manitoba, Canada, ran a moving account of IC sufferer, Janice Starodub, a local resident who, after a 15-year reprieve from her more debilitating IC symptoms that first developed in the early 1990s, is now in severe chronic pain and desperately seeking relief. The June 16th edition of the Jackson Hole Star Tribune from Casper, Wyoming, featured an article about Nadine Kern, an IC and endometriosis patient who, despite little relief from her symptoms, continued to compete in barrel racing with her horse, Kern.
The July 2007 "reception area copy" supplement to the journal, The Female Patient, was dedicated to the topic of IC. The Female Patient, a medical education journal for primary providers of women's healthcare, partnered with Ortho Women's Health and Urology to produce this supplement. ICA Board and Medical Advisory Board member, Robert Evans, MD, was one of the authors of the supplement.
The American Pain Foundation's website featured a poignant story of the struggles and frustrations of one woman with IC. The woman, Debbie, gave kudos to the ICA for helping her to locate a pain clinic that understood her condition and helped to treat her chronic pain.
The August 27th edition of the Post and Courier of Charleston, South Carolina, featured interstitial cystitis in a Q & A format provided by the nationally syndicated Harvard Medical School Adviser, a United Feature Syndicate column.
IC patient, poet, and activist Marguerite Guzmán Bouvard's new book, published in early 2007 and entitled Healing: A Life with Chronic Illness, is a practical and spiritual guide to living well with chronic illness. Dr. Bouvard received her PhD from Harvard and was for many years a professor of political science and creative writing at Regis College. She has authored books in the fields of politics, psychology, women's studies and poetry, among them the important The Path Through Grief: A Compassionate Guide and Revolutionizing Motherhood: The Mothers of the Plaza de Mayo (1998).
Our thanks to the University of Arizona's KUAT public television station for producing an excellent piece about interstitial cystitis. The very informative segment featured local IC patient Beth Barrasso, who spoke candidly of her personal struggle with IC. Also, Kalpesh Patel, MD, of Old Pueblo Urology in Tucson, spoke compassionately about the difficulties faced by people with IC when they try to seek medical help.
Twice in late 2007 the Internet Radio Program Patient Power with Andrew Schorr featured ICA Medical Advisory Board member Robert Moldwin, MD. The show serves to bring patients together in a radio and Internet community to help navigate an often inhospitable healthcare system. Patient Power takes questions from callers and Internet listeners on topics such as how to find the right doctor, how to advocate effectively, when to get a second opinion from a specialist, and how to evaluate one treatment option over another. Dr. Moldwin and ICA Board member, Rhonda Garrett, were interviewed by Mr. Schorr on November 1st and, after an overwhelming listener response, Dr. Moldwin appeared in the show again on December 4th. At least one additional show was planned for early in 2008.
The October 8th edition of the Chicago Daily Herald featured an in-depth article about IC by Susan Stevens. The article, 40 Bathroom Trips a Day, included interviews with two longtime IC advocates and ICA supporters and patient advocates, Rhonda Garrett and Barb Zarnikow. Rhonda, currently an ICA Board member, has been an ICA advocate for many years, and has been featured numerous times in IC media coverage. Barb, whose husband Eric serves on the ICA's Board of Directors, is the founder and leader of the Northwest Suburban Interstitial Cystitis Support Group of Illinois. She is also an ICA National Patient Support Advocate.
Kudos to Health magazine and Woman's Day. The April issue of Health featured an information box that provides helpful quick facts about IC. The April 1st edition of Woman's Day featured an IC patient's story and that of her sister in the My Story section of the magazine. In the article entitled, It Was Worse Than Childbirth, Michelle McDuffee describes her own battle with IC and the sadness she felt when her sister Mia Eddy was also diagnosed with IC.
Medical reporter Penny Allen, who also writes for the ICA, has helped put IC news onto the pages of Urology Times again. The April 1st edition of UT featured a cover story by Penny that took a comprehensive look at the IC "name change" issue that was at the forefront of IC news throughout 2007. The issue also carried three more articles on the latest IC research presented last October at the 2006 International Symposium: Frontiers in Painful Bladder Syndrome and Interstitial Cystitis, sponsored by the National Institute of Diabetes and Digestive and Kidney Diseases.
In May, as part of our CDC cooperative IC outreach campaign, the ICA placed a full-page ad in Urology Times. This special issue was distributed to attendees at the American Urological Association (AUA) Annual Meeting in Anaheim, California, in late May. The ad directed attendees to the ICA's booth at the annual meeting. The issue was also mailed to all Urology Times subscribers.
In late May ICA Board member Rhonda Garrett was featured in the American Urological Association Foundation's (AUAF) Urology Health Extra, a quarterly newsletter designed to keep you up to date on the latest breakthroughs in a variety of urologic health issues. This issue was distributed by the AUAF to attendees at the AUA Annual Meeting in Anaheim.
In mid-year, through our cooperative agreement with the CDC, the ICA positioned an unprecedented amount of media activity on IC and the ICA, including promotional spots on television (through Direct TV and the American News Network's Consumer Edition), and on radio (through coverage on Radio Health Journal). These public service announcements featured ICA Medical Advisory Board member Robert Moldwin, MD, and dedicated IC patient advocate, Mary Ellen Altieri, RN. After just over one week of air time for the TV spots, the PSA which was posted on youtube.com had already received nearly 1000 views, with a top rating of 5 stars.
In June the Society for Urologic Nurses and Associates (SUNA) published in their journal, Urologic Nursing, a continuing medical education (CME) article on IC by ICA Medical Advisory Board member, John Warren, MD, of the University of Maryland. The article discusses the importance of urologic nurses in caring for patients with IC. Dr. Warren reviews the typical diagnosis and therapy for this chronic disease. He says urologic nurses play a key role in helping patients manage the disease, as well as providing sensitive counseling and treatment.
As the result of the ICA's spring media tour in New York City, which was made possible by the CDC cooperative agreement, the July issue of Family Circle ran a short and factual article on IC, including an interview with ICA Founder and President, Vicki Ratner, MD, and a listing of the ICA website as the go-to place for accurate IC information and much needed support.
Our thanks to Urology Times (UT) for featuring IC once again on the cover. The August 15th edition of UT ran the article, Significant Comorbidities are Missed in Interstitial Cystitis Workups, by Penny Allen.
California IC patient and longtime ICA volunteer, Norma Kellam, worked diligently throughout 2007 with the Spanish language news community to get the word out about IC. In August she achieved another success by facilitating the publication of an informative IC article in Monitor Hispano, a weekly Arizona Hispanic newspaper that is published every Friday with a circulation of 19,000 copies per week and a readership of 78,000. The article, which was featured in the August 10th edition, covered the basics of IC and directed people to the ICA for more information. Norma, who is a nurse by profession, has become a very accomplished Spanish translator. She was directly involved in the very first Spanish translation of an ICA brochure and often assists the ICA in dealing with Spanish-speaking patients who contact us for assistance. Norma has been particularly successful in her efforts to lobby for the publication of this vital information. ¡Muchas gracias, Norma!
With more thanks to Norma Kellam, Atlanta Latino, Atlanta's free weekly 60-page bilingual (Spanish and English) newspaper recently published an online article about IC. Outreach to diverse communities is a very important aspect of the ICA's mission. In additional to our outreach efforts, the ICA currently provides an array of educational materials in Spanish (http://archives.ichelp.org/xlt-es/welcome.html).
On November 6th longtime New York Times personal health columnist Jane E. Brody mentioned interstitial cystitis in a column entitled Living with Pain that Just Won't Go Away. This was the first of her three columns dedicated to chronic pain issues. Our thanks to the New York Times and Ms. Brody for tackling the complex subject of chronic pain.