A special supplement to the June 2005 edition of the International Urogynecology Journal published the proceedings of the International Consultation on Interstitial Cystitis—Rome (ICICR), and the inaugural meeting of the Multinational Interstitial Cystitis Association (MICA) held in September 2004 in Rome. ICA Founder and President Emeritus, Vicki Ratner, MD, was one of the guest editors of the journal supplement, along with Mauro Cervigni, MD, of Italy, and ICA Medical Advisory Board member, Philip Hanno, MD.

The 2005 American Urological Association annual meeting presented more information and research to urologists about IC than ever before. The meeting included the first-ever plenary session devoted exclusively to IC. Speakers included Susan Keay, MD, PhD, from the University of Maryland, Baltimore, who spoke about biomarkers for IC, Deborah Erickson, MD, now of University of Missouri-Columbia School of Medicine, spoke about treatment options and new treatments on the horizon, Christopher Payne, MD, of Stanford University, Stanford California, urged his colleagues to learn to manage their IC patients’ chronic pain, especially with opioids, which are the mainstay of pain therapy. Urologists also learned about IC and its treatment at two education courses. One course was led by David Burks, MD, of the Henry Ford Health System based in Detroit, Michigan, and Philip Hanno, MD, at the University of Pennsylvania, Philadelphia. The other was led by Dr. Payne and Dr. Erickson. A moderated poster session that focused on IC was also held. 

In September, the ICA held the University of Maryland IC Regional Forum in Arlington, Virginia. Nearly 200 people with IC and their loved ones attended. IC patient, Yale University professor, and National Book Award winner Carlos Eire, PhD was the keynote speaker. University of Maryland IC researchers and clinicians John Warren, MD, Susan Keay, MD, PhD, and Toby Chai, MD, spoke about their research and experience in treating IC.

The ICA also assisted local support groups in organizing patient forums, including the MetroWest IC Support Group in Natick, Massachusetts, and a forum in Albuquerque, New Mexico.

Patients and those who love them helped raise awareness of IC and donations to support the work of the ICA in remarkably creative ways. In May, ICA member and Akron, Ohio, support group leader Laura Santurri and her dad, Pat Santurri, ran the Rite Aid Cleveland 10K. In June, ICA member Lucy Lehner of Marion, Ohio, cycled more than 430 miles in the Great Ohio Bicycle Adventure. In July, Cirque du Singe Brisé (Circus of the Shattered Monkey), a showcase for new music, songwriters, and spoken word performers, held a benefit for IC in Boston. In October, Tara and Charlie O’Regan and Frank Meisner, family and friends of 11-year-old Boston-area IC patient JT McNeil, held a charity golf tournaments. The O’Regan Open, a "night light" tournament held the night of a World Series game, was very well attended, and showed the extraordinary dedication to finding an IC cure on the part of these Red Sox fans. Also in October, Joe Daczko of Hiram, Ohio, dedicated husband of ICA member Angi Daczko, ran a marathon—a repeat of his fundraising feat in 2004.

The ICA released a new educational video (available in both DVD and VHS formats), IC: The Basics. Recorded at the ICA’s December 2004 Long Island Regional IC Forum, the video offers more than 90 minutes of up-to-the-minute IC information.

California IC patient and longtime ICA volunteer Norma Kellam facilitated publication of a lengthy article on IC, Interstitial Cystitis: What you need to know/Cistitis Intersticial: Lo que usted debe saber, in the August 11-17 Health/Salud section of Dos Mundos, the Midwest’s leading bilingual weekly newspaper.

Thousands of new and current IC patients received help through the ICA’s patient services: the website (www.ichelp.org), including IC Question Corner, the toll-free help line (1 800 HELP ICA), National Patient Support Advocates, the ICA Physician Registry, IC Connections email lists, and the ICA’s patient newsletters, the ICA Update and Café ICA.

The 2005 American Urological Association annual meeting presented more information and research to urologists about IC than ever before. The meeting included the first-ever plenary session devoted exclusively to IC. Speakers included Susan Keay, MD, PhD, from the University of Maryland, Baltimore, who spoke about biomarkers for IC, Deborah Erickson, MD, now of University of Missouri-Columbia School of Medicine, spoke about treatment options and new treatments on the horizon, Christopher Payne, MD, of Stanford University, Stanford California, urged his colleagues to learn to manage their IC patients’ chronic pain, especially with opioids, which are the mainstay of pain therapy. Urologists also learned about IC and its treatment at two education courses. One course was led by David Burks, MD, of the Henry Ford Health System based in Detroit, Michigan, and Philip Hanno, MD, at the University of Pennsylvania, Philadelphia. The other was led by Dr. Payne and Dr. Erickson. A moderated poster session that focused on IC was also held.

The International Continence Society included a chapter on painful bladder syndrome/interstitial cystitis (PBS/IC) in its Proceedings of the 3rd Consultation on Incontinence, which was held in Monaco in June 2004. ICA Founder and President Emeritus, Vicki Ratner, MD, attended this conference and is a co-author of the IC/PBS chapter. ICA Medical Advisory Board Co-chair, Philip Hanno, chaired the IC/PBS chapter committee.
                                                                                                                                                       The ICA awarded Kristene Whitmore, MD, its 2005 Advocate of the Year Award. ICA Founder and President Emeritus, Vicki Ratner, MD, presented the award to Dr. Whitmore at the Society for Women in Urology meeting, held at the American Urological Association meeting in San Antonio, citing her dedication to IC research and awareness and her support of IC patients. Dr. Whitmore, Chief of Urology at Graduate Hospital in Philadelphia, founded one of the first multidisciplinary pelvic pain treatment centers.

ICA Founder and President Emeritus, Vicki Ratner, MD, along with a group of American urologists and researchers, presented the latest information on IC to hundreds of Japanese urologists at the 93rd annual meeting of the Japanese Urological Association (JUA) in April in Tokyo, Japan. Christopher Payne, MD, of Stanford University gave an overview of IC at a well-attended plenary session, and Dr. Ratner and Susan Keay, MD, PhD, of the University of Maryland, presented a medical education course on IC that more than 300 medical professionals attended. This was the first time that IC has ever been included on the JUA program, thanks to the efforts of Hikaru Tomoe, MD, who is a Japanese female doctor very dedicated to bringing IC to the forefront of urology in Japan.

The ICA reached out to physicians with literature and information at the following professional research and education meetings:

• American Urological Association Annual Meeting
• American Pain Society 24th Annual Scientific Meeting
• American Academy of Pain Medicine 22nd Annual Meeting
• International Continence Society 35th Annual Meeting
• International Pelvic Pain Society Annual Meeting
• 4th International Seminar on Female Urology and Urogynecology
• North American Society for Pediatric and Adolescent Gynecology 19th Annual Clinical Meeting
• Society of Urologic Nurses and Associates Annual Symposium
• Society of Urologic Nurses and Associates Bladder, Bowel, and Pelvic Floor Annual Symposium

Our quarterly online and hardcopy publication for healthcare providers, Professional Perspectives, was distributed to thousands during 2005 to help to keep the medical community knowledgeable about the latest IC treatments, research, news, and events.

Advocacy 2005

IC patients from 13 states participated in the ICA’s Fifth Annual Capitol Hill Walk. They went to Capitol Hill in June to visit their representatives and ask for funds and support for IC research and awareness. The ICA advocacy team conducted extensive training sessions designed to assist participants in making the best use of Congressional visits.

As in the past, the primary goal of the Walk was to educate Members of Congress and their staffs about IC and to specifically request their support of our legislative agenda. At the 2005 Walk, the ICA strategically selected and invited IC patients to participate who not only had some experience in advocacy, but who also resided in areas represented geographically by Members serving on health-related committees.

The ICA, a member of the Partners for Understanding Pain, participated in a Capitol Hill event to raise awareness of chronic pain and urge passage of the National Pain Care Policy Act (HR 1020), which would improve pain education for physicians and access to pain management services and increase research on pain conditions. Numerous ICA member activists also wrote to their representatives asking them to support the legislation.

The ICA continued to urge Congress to support increased IC research by the NIH, and encouraged their support of an upcoming NIDDK International Scientific Symposium on IC in 2006.

ICA members added their voices to those of many others with chronic pain who submitted official comments to the Drug Enforcement Agency on policy that would affect their access to pain medicine.

Public and Professional Awareness 2005

Veteran Hollywood actress Melody Thomas Scott, who plays Nikki Newman on The Young and the Restless, chose to speak openly about her struggles with IC to help increase awareness and understanding of the condition. She was featured on the cover of the October/November 2005 issue of the ICA Update.

It isn’t easy for IC patients and others with chronic pain to get treatment. Millions of Americans learned about their pain problems and the limitations on their access to treatment from unprecedented media coverage on pain in April and May—hours’ worth of television time throughout an entire week on NBC’s Today Show and a week on ABC’s Good Morning America, World News Tonight, Nightline, and This Week with George Stephanopoulos, and a week of feature articles in USA Today with front page coverage.

Today Show women’s health contributor, Dr. Judith Reichman, addressed IC in her MSNBC online Tuesday Health column. The article, "When You Gotta Go, It May Be This," gives a general overview of IC symptoms, diagnostic procedures, and treatments.

The ICA assisted with writing of the chapter on IC that was included in the new 2005 edition of Our Bodies Ourselves, the groundbreaking book by Boston Women’s Health Collective that was first published 35 years ago.

IC and the ICA were mentioned in the 2004 Consumer Reports on Health special publication, The Best of Health—275 Questions You’ve Always Wanted to Ask Your Doctor. One of the questions was about IC. The authors referred readers to the ICA.

Through coverage of the International Pelvic Pain Society and American Urological Association meetings, Urology Times, the leading newsmagazine for urologists, published more than a dozen articles about IC and related conditions.

The ICA welcomed new Medical Advisory Board member Regula (Ragi) Doggweiler, MD. Long dedicated to caring for IC patients, she treats patients and conducts research. She is cofounder of the International Association for the Study of Pain’s Special Interest Group on Pain of Urogenital Origin. We also welcomed David A. Burks, MD, of the Henry Ford Health System, based in Detroit, Michigan. He developed the female urology and incontinence program there and he is currently the H-2 Inpatient Unit Director, Division Head for Urology at the Fairlane Ambulatory Center and Physician in Charge of Urology Satellite Clinics.

Health columnist Dr. Paul Donohue once again featured IC in his very popular nationally syndicated medical advice column. The column featuring IC began circulation during the month of October. The ICA received increased calls on its toll-free number and increased website hits during the first week of the column's appearance in newspapers nationwide. All callers were sent free information on IC. We thank Dr. Donohue for acknowledging the seriousness of this disease, and helping patients to find help and validation.

Research 2005
The ICA’s own Pilot Research Program continued its work with two very important studies in conjunction with the University of Chicago’s National Organization for Research (NORC). These studies will further our understanding of IC and its possible causes. Many of these ICA-funded research projects have gone on to receive NIH research funding. 

The Fishbein Family IC Research Foundation continued its support of studies investigating the genetics of IC and potential IC treatment modalities. The Foundation’s mission is twofold: to find the causes of, and a cure for, IC, and to relieve discomfort in patients until that goal can be achieved. Many of the Foundation-funded research projects have gone on to receive NIH research funding.

The ICA continues to work closely with the National Institutes of Health’s Interstitial Cystitis Clinical Research Network (ICCRN) to conduct clinical trials on promising IC treatments and therapies.

The NIH contracted The Rand Corporation to undertake a national IC epidemiology study. This large-scale study, entitled Rand Interstitial Cystitis Epidemiology (RICE) will take place over the next several years.

The NIDDK embarked on a national IC Awareness Campaign in the spring of 2005. Part of their campaign included the distribution of updated IC information to urologists across the country. Also, they were able to have a column about IC syndicated in many newspapers around the country.

 

Revised December 13, 2008