Cafe ICA January 2009 ~ volume 9, number 1
IC medical highlights, self-help and coping strategies, and ICA news

Alaven Pharmaceutical LLC		Hot Off the Press MAPP Steering Committee Meeting Winter 2009 ICA Update is at Press! New and Better Online Shopping at www.ichelp.org More ICA Website Updates Voices in the IC Community Japanese Urological Association Publishes IC Guidelines NIH Urology Research Centers Announce RFA NVA Invites Proposals for Treatment Registry Boston Arts Blog Features Marguerite Bouvard Cost of Illness Study Needs Your Help News You Can Use All Things Diet Medical Research Study Now Recruiting Participants Uracyst Now Available in Many European Countries Living with IC on a Tight Budget New Website Assists Caregivers NIH Begins New Era of Information Research Highlights Resource Materials Upcoming Conferences Products That Can Help You
Farr Labs LLC

From the ICA Mailroom
Thanks so much for telling me about your online monthly news digest! I appreciate the support of your organization so much! We live in a small mountain town and in addition to IC, I am disabled with my back and don't get out much, so this is wonderful. Your website is excellent! Marilyn

HOT OFF THE PRESS

ICA Participates in MAPP Steering Committee Meeting
The planning stages of the Multidisciplinary Approach to the Study of Chronic Pelvic Pain (MAPP) network are in full swing. The MAPP network, a multi-year project sponsored by the National Institutes of Health (NIH) will be investigating IC, chronic prostatitis, and conditions oftentimes found to co-exist. At the two-day December MAPP Steering Committee meeting, MAPP researchers (including representatives from six discovery sites across the country, a technology and tissue center, and a data coordinating center) discussed a range of issues from how best to enroll patients to the most effective tools for collaboration among the researchers. ICA Medical Advisory Board and Board of Directors member Robert Evans, MD attended the meeting representing the ICA. Having a presence at this meeting allowed us the opportunity to serve as the voice for patients, offering suggestions on everything from study design to patient recruitment to information dissemination about the project at the MAPP meeting.

Although many details still need to be ironed out, it is clear that the group of researchers engaged in the MAPP network are deeply committed to better understanding IC and CP/CPPS patients and the underlying mechanisms that cause so many to suffer from multiple conditions. The challenge before these researchers is significant, not the least of which is stretching finite resources into the kind of results that patients desperately hold out hope for.

Coming Soon: The NIH's MAPP website, which will be solely dedicated to this multi-center project.

Winter 2009 ICA Update is at Press!

The winter issue of the ICA Update magazine is on its way to ICA members!

This issue is dedicated to self-help strategies. You'll learn:

- how to get a better night's sleep
- what the most common diet triggers really are
- how to put sexual intimacy back in your life
- how to calm your bladder down when you need to
- how to exercise to feel healthy and even help ease pain

The cover features Awakened by artist Sarah Steed, who has IC. Sarah shared with the ICA Update that the inspiration for this painting was from a sketch she did a year before she began the painting. Sarah noted, "The imagery was conjured very subconsciously." The black cat is Sarah's personal symbol for healing -- her childhood cat was a natural healer. "Whenever I was in pain, my cat knew. Even if the kitty was in a different room when something happened she would come to comfort me. With her there I was strong enough to face anything. I was no longer disabled; not disconnected or hopeless like the figures in the background. I was awakened."

The ICA Update is mailed to all ICA members donating a minimum of $45.00 (US dollars) or more per year ($60.00 outside the US). If you are not already an ICA member, join the ICA to begin receiving this information-packed quarterly magazine.

Read more.

New and Better Online Shopping at www.ichelp.org
ICA online purchases are now handled in a secure encrypted environment. Using PayPal, an industry leader in web-based shopping, you can now shop for IC resource materials, join the ICA to receive membership benefits, and donate to help the ICA and all people with IC. And, you can do all of this with complete confidence in a secure, online system.

PayPal is a safe, easy way to pay online, allowing users to pay with credit cards, bank accounts, buyer credit, or account balances without sharing financial information. When shopping, joining, or making a contribution to the ICA, simply click the orange "Donate" button and you will be directed to the secure PayPal server.

PayPal has received more than 20 awards for excellence from the Internet industry and the business community -- most recently the 2006 Webby Award for Best Financial Services Site and the 2006 Webby People's Voice Award for Best Financial Services Site.

More ICA Website Updates
We are updating the ICA website and recently posted a few new sections, including information about patient assistance programs and related conditions.

• Read about patients' assistance programs.
• Learn about some of the more common overlapping conditions including contact information for other patient health associations.
• Get information about IC in multiple languages, or visit the Spanish language page.
• Find out about how to have less painful pelvic exams.

Read more.

ICA CALL to ACTION: Please email us to let us know your thoughts and suggestions about the ICA website. We are looking to continue to expand the information provided and eager to hear your thoughts on potential topics. Contact us with feedback about the site at ICAmail@ichelp.org.

From the ICA Mailroom
I appreciate all your help/insight. You have made it a bit less scary. I was terrified after reading some of the horror stories online. Thank you. Elizabeth

VOICES IN THE IC COMMUNITY

Japanese Urological Association Publishes IC Guidelines
The need for standardized guidelines for diagnosing and treating IC has become very apparent over the past few years -- and has generated many heated debates. The good news is that several countries and professional medical associations are now in the process of developing their own IC Guidelines.

Japanese Urological Association's new IC Guidelines were recently published in the International Journal of Urology. Japanese Guidelines for Diagnosis and Treatment of Interstitial Cystitis by Homma, Ueda, Ito, Takei, and Tomoe is a very detailed, comprehensive document that you can access for free online. Members of the Society of Interstitial Cystitis of Japan developed the guidelines, which are endorsed by the Japanese Urological Association and aimed at both urologists and other women's healthcare professionals. The English translation in this journal is a shortened version of the Japanese guideline.

Read more.

NIH Research Centers Announce RFA
Mounting complexities associated with the studies of disease processes require networks of investigators with a variety of knowledge and expertise. To help to continue to build these types of networks, the National Institute of Diabetes and Digestive and Kidney Diseases (NIDDK), one of the National Institutes of Health (NIH), announced the release of a new program funding announcement. The George M. O'Brien Urology Research Centers, a network of urology research centers across the country, strive to improve efficiency and increase collaborative efforts among groups of investigators at institutions with established comprehensive urology research bases.

The RFA is available at http://grants.nih.gov/grants/guide/rfa-files/RFA-DK-08-016.html.

• Letter of intent -- although not required is strongly encouraged by February 18, 2009.
• Application due date: P50 application due March 18, 2009.

To view this RFA as well as RFA updates and timelines, please visit the NIDDK's "O'Brien Kidney and Urology Research Centers Updates" web page. To request additional information, please contact Dr. Debuene Chang at changtd@mail.nih.gov.

NVA Invites Proposals for Treatment Registry
The National Vulvodynia Association (NVA) invites proposals from clinical researchers to develop and then maintain a provider-based Vulvodynia Treatment Registry. This grant requires the participation of at least two researchers from different institutions. The goals in creating this registry are to determine:

• which treatment(s) is effective for each vulvodynia subtype, and
• biological characteristics of women who benefit from a specific treatment.

It is the NVA's hope that information gleaned from the registry will complement etiological findings and aid clinicians in the development of evidence-based treatment guidelines.

All proposals are due on Monday, March 23, 2009 at 5pm EST via e-mail to chris@nva.org.

The maximum grant for developing and maintaining the registry is $50,000. Before submitting your proposal, please note that NVA requires confirmation from the recipient(s) that all funds will be applied to direct costs of the project and not to institutional costs, i.e., overhead.

Read more.

Boston Arts Blog Features Marguerite Bouvard
Readers may be familiar with Marguerite Bouvard, PhD. She has lived with and written about IC and chronic illness for a number of years and has been featured in Café ICA, the ICA Update, and the ICA book The Many Faces of IC.

Dr. Bouvard was recently interviewed on the Boston Area Small Press and Poetry Scene blog. In the interview, Dr. Bouvard, who is the author of Healing: A Life With Chronic Illness, gives an honest and moving account of life with chronic illness.

Read more.

Cost of Illness Study Needs Your Help
The National Vulvodynia Association (NVA) is seeking women in the United States who are diagnosed with either generalized vulvodynia or vulvar vestibulitis syndrome (aka vestibulodynia) to participate in a cost of illness survey which asks questions about lost work hours and out-of-pocket expenses related to having vulvodynia.

Participation requires only 3 hours of your time over the next 6 months. After completing the initial intake form, participants will receive a complimentary copy of NVA's self-help/educational guide, I Have Vulvodynia - What Do I Need to Know? After completing the 6-month survey, participants will receive a complimentary subscription to the NVA's printed newsletter NVA News.

Click here for additional information or to participate, or contact Crystal Dade at 301-949-5114.

From the ICA Mailroom
Just hearing from you has helped me to "speak up for myself" and get some straight answers. Thank you once again for your excellent and informative and helpful response. Lori Zingarelli, IC Patient

NEWS YOU CAN USE

All Things Diet
The ICA tackles IC and diet issues in partnership with IC diet expert Julie Beyer, RD. Beyer addresses IC and diet questions in this column and helps guide people with IC in the right direction and to make the right choices.

This month's featured Q & A:

Dear Julie,

I was just diagnosed with IC and was prescribed Elmiron to help repair the lining of my bladder. I am hoping that I don't have to follow as strict of a diet while taking this, but is that possible? Thanks for your help! Jess C.

Dear Jess,

Although we don't have a lot of research to support this yet, many practitioners and people with interstitial cystitis do find that over time they can add more foods to their diet once the bladder is given a chance to settle down or heal a bit. If you are just beginning with pentosan polysulfate sodium (Elmiron), however, I would highly suggest that you build your meals around the Usually Ok list on the IC diet list, available on both the ICA website and ic-diet.com site. By only consuming foods and beverages that are as IC safe as possible, you will give Elmiron every chance to work.

Think of it this way: If you had a scrapped knee you would take good care of it so that the knee could heal, right? You would clean it, put antibiotic cream on it, and keep it bandaged. You definitely wouldn't take that bandage off three times a day and scrape the wound with sandpaper! In a similar fashion, we believe Elmiron works to protect the bladder lining and possibly heal it like a bandage on a skinned knee. If you eat bladder abrasive foods while you are taking Elmiron, it would be like taking sandpaper to a skinned knee.

Therefore, in order to give Elmiron every chance to work at healing your bladder, it only makes sense to follow a fairly restrictive diet for the first few months -- at least until you know if the Elmiron is going to work or not. After you begin to get some relief with Elmiron, you can then begin to add foods back into your diet slowly. It may seem like a long process now, but it can definitely pay off in the end.

Good luck!

Julie Beyer, MA, RD
Author of Confident Choices: Customizing the Interstitial Cystitis Diet and Confident Choices: A Cookbook for Interstitial Cystitis and Overactive Bladder. For individual counseling and more information please visit: http://ic-diet.com/

Medical Research Study Recruiting Participants
Pfizer has begun recruiting throughout the United States for a new clinical trial that will study the effectiveness of an investigational medicine in treating the pain of interstitial cystitis/painful bladder syndrome (IC/PBS).

Pfizer's clinical study is currently underway in six countries including the US and Canada to evaluate the safety and effectiveness of A4291043 (NCT 00739739) for pain associated with IC.

The investigational medication, taken as a capsule, might help to regulate pain responses, especially in chronic pain conditions. This is now being assessed in this clinical study. The aim of this study is to determine the effects of an investigational medication compared to placebo (an inactive substance) for men or women who have IC/PBS and find out if they will benefit from 14 weeks of an investigational medication compared to placebo. Subjects will participate in the study for approximately 15 weeks. Subjects who take part will receive study medication and all study-related procedures without charge. Reimbursement will be provided for travel expenses. Click here to watch a brief video answering some frequently asked questions about the study, and how you can find out more.

Approximately 12 clinical research sites across the US are currently looking for men and women at least 18 years of age who have been diagnosed with IC/PBS and have had symptoms for at least 6 months.

This research study is now taking place at the sites listed below. If you wish to see if you are eligible to participate and live within reasonable traveling distance, please contact the site nearest to you for further information. You are under no obligation to participate. If you know someone who is suffering from the pain associated with interstitial cystitis, please share this information about participating in the research study.

• Alabama: Dr. Madonia -- Mobile, AL (Tel: 251-633-0793 x250)
• California: Dr. Davis -- Glendora, CA (Tel: 626-914-3295)
• Connecticut: Dr. Peters-Gee -- Farmington, CT (Tel: 860-678-7300 x15)
• Massachusetts: Dr. Kotkin -- Brighton, MA (Tel: 617-642-6767)
• New York: Dr. Efros -- Garden City, NY (Tel: 516-746-2190) & Dr. Goldfischer -- Poughkeepsie, NY (Tel: 845-437-5052)
• North Carolina: Dr. Evans -- Burlington, NC (Tel: 336-538-2324)
• Ohio: Dr. Karram -- Westchester, OH (Tel: 513-463-2509)
• Oklahoma: Dr. Parkhurst -- Bethany, OK (Tel: 405 709 4591)
• Pennsylvania: Dr. Oselinsky -- State College, PA (Tel: 814-238-8418 x206)

Uracyst Available in Many European Countries
Though still not FDA-approved, over the past two months Stellar Pharmaceuticals Inc. of Canada has announced through company news releases licensing agreements for distribution of their IC product Uracyst to several European countries including the Netherlands, Belguim, Luxemburg, Sweden, Denmark, Finland, Norway, Iceland, the United Kingdom, and Ireland. Uracyst is also available in Canada.

Uracyst is a bladder instillation product. The active ingredient in Uracyst is sterile sodium chondroitin sulphate, a substance found naturally in the body including the glycosaminoglycans layer of the bladder (GAG layer). Stellar Pharmaceuticals Inc. developed Uracyst to help to replenish the GAG layer in IC patients.

Living with IC on a Tight Budget
In today's tight economy, it is even tougher than usual for people with IC to stretch dollars to meet the needs and necessities of living with IC (which can be quite costly), such as IC-friendly foods and beverages, medicines and supplements, and home care and personal care products. Here are some tips to help you stretch those dollars:

• Get Organized!
• Surf the Net -- and Comparison Shop
• Look for Ways to Save on Medicines
• Put Your Grocery Budget on a Diet
• Clip Coupons

You CAN cut costs AND live well with IC: Read more.

New Website Assists Caregivers
Do you help a family member or a friend buy groceries and pick up prescriptions? Are you the designated driver for medical appointments? Do you help care for a parent in their home? Then you are a caregiver and the Centers for Medicare & Medicaid Services (CMS), part of the US Department of Health and Human Services (HHS), offers a new online resource for you!

Ask Medicare helps family caregivers -- those who are family members or friends who help people with Medicare -- access and use valuable healthcare information, services, and resources.

More than 44 million Americans (one in five adults), provide care to a loved one, friend, or neighbor, valued in economic terms at $350 billion annually, according to a recent report by the American Association of Retired People (AARP). This new initiative offers a one-stop website for caregivers that provides easy access to useful information about Medicare and other essential resources to help with caregiving.

The Ask Medicare website provides links to key partner organizations that assist caregivers and beneficiaries and presents personal stories from caregivers in the community. Support information and tools to help caregivers address common problems is also available. As part of the initiative, CMS will launch an e-newsletter for caregivers that will deliver information into subscribers' email boxes.

NIH Begins New Era of Information
Year 2009 is ushering in a new era at the NIH that includes more transparency and greater access to information.

More access to online articles at PubMed. If you want to look up a published article about IC or any other medical condition, your best bet is to start with a visit to the US government's PubMed database. The NIH Public Access Policy ensures that the public has access to the published results of NIH funded research through PubMed. It requires scientists to submit final peer-reviewed journal manuscripts that arise from NIH funds to the digital archive PubMed Central upon acceptance for publication. To help advance science and improve human health, the Policy requires that these papers are accessible to the public on PubMed Central no later than 12 months after publication. If the publisher has a website that offers full-text of its journals, PubMed provides links to that site as well as biological resources, consumer health information, research tools, and more. There may be a charge to access the text or information.

Online updates on research. The Research, Condition, and Disease Categorization (RCDC) System provides detailed funding information for 215 major areas. Initiated at the request of Congress to provide consistent and transparent NIH research funding information, the new information is reported in a table titled Estimates of Funding for Various Diseases, Conditions, and Research Areas. You can use this information to view the total funds spent in each category for the current and previous fiscal years based on grants, contracts, and intramural research (conducted in NIH's own laboratories and clinics). For the first time, the project listings and the associated dollar amounts will be available. By clicking on each of the categories, you can access full project listings for that category and view, print, or download the detailed report. Links to patents and publications associated with each project also will be available in the next few months. For more information about the RCDC process, click here.

RESEARCH HIGHLIGHTS

Treatments/Drug Discovery

Advances, Setbacks Characterize Vanilloid Drug Research
Wong GY, Gavva NR. Therapeutic potential of vanilloid receptor TRPV1 agonists and antagonists as analgesics: Recent advances and setbacks. Brain Res Rev. 2008 Dec 25. [Epub ahead of print]

The vanilloid receptor TRPV1, known popularly as the "hot pepper" receptor, is a target that researchers, including IC researchers, have long aimed at for pain reduction. The receptor abundantly expressed in c-fibers, which are nerve fibers that sense pain.
Read more.

Vanilloid Receptor Plays Role in Chronic Pain and Chronic Cough
Adcock JJ. TRPV1 receptors in sensitisation of cough and pain reflexes. Pulm Pharmacol Ther. 2008 Dec 27. [Epub ahead of print]

The vanilloid receptor (TRPV1) may play a role in many types of pain -- inflammatory, visceral, cancer, and neuropathic -- but also in inflammatory bowel disease (IBD), interstitial cystitis, urinary incontinence, pancreatitis, migraine, and airway disease (including chronic cough).
Read more.

Bladder Injections of Botox Work Better than BCG
El-Bahnasy AE, Farahat YA, El-Bendary M, Taha MR, El-Damhogy M, Mourad S. A Randomized Controlled Trial of Bacillus Calmette-Guerin and Botulinum Toxin-A for the Treatment of Refractory Interstitial Cystitis. UIJ. 2008 Dec;1(5).

These Egyptian researchers pitted instillation of bacille Calmette-Guérin (BCG) against injections of botulinum toxin A (Botox) in a trial with 36 patients. These patients met the old from of the National Institute for Diabetes and Digestive and Kidney Diseases (NIDDK) research definition of IC, which generally includes patients with more serious disease.
Read more.

Patients Generally Satisfied with Bladder Enlargement
Astroza Eulufi G, Velasco PA, Walton A, Guzmán KS. Enterocystoplasty for interstitial cystitis. Deferred results. [Article in Spanish] Actas Urol Esp. 2008 Nov-Dec;32(10):1019-23.

At a hospital in Chile, 15 IC patients with very bad IC underwent bladder enlargement surgery between 1999 and 2006.
Read more.

Basic Research

New Ideas about Gene Expression Could Refocus IC Research
Elgavish A. Epigenetic Reprogramming: A Possible Etiological Factor in Bladder Pain Syndrome/Interstitial Cystitis? J Urol. 2009 Jan 14. [Epub ahead of print]

Basic research on the bladder lining, the nervous system, genetics, and processes that affect gene expression suggest that some reprogramming of gene expression (called epigenetic reprogramming) may explain the abnormalities in bladder lining cells, mast cells, and nerve cells seen in IC.
Read more.

Diagnosis/Assessment

Quality of Life Tracks Treatment Response
Sairanen J, Leppilahti M, Tammela TL, Paananen I, Aaltomaa S, Taari K, Ruutu M. Evaluation of health-related quality of life in patients with painful bladder syndrome/interstitial cystitis and the impact of four treatments on it. Scand J Urol Nephrol. 2009 Jan 9:1-8. [Epub ahead of print]

Today, most researchers use a measure called the global response assessment (GRA) to gauge how patients do with treatment. It simply asks if you are better, the same, or worse.
Read more.

Better Questionnaires Could Give Better Answers in Treatment Studies
Payne C, Allee T. Goal achievement provides new insights into interstitial cystitis/painful bladder syndrome symptoms and outcomes. Neurourol Urodyn. 2009;28(1):13-7.

How well a treatment does for IC patients is usually measured with a global response assessment scale, on which patients simply rate whether they are better, the same, or worse. But these investigators are looking for something more specific, similar to what has been used in chronic pain, rheumatoid arthritis, and incontinence.
Read more.

Tarlov Cyst Surgery Resolves Bladder Symptoms
Ruibal Moldes M, Sánchez Rodríguez-Losada J, López García D, Casas Agudo V, Janeiro País JM, González Martín M. Tarlov cyst and symptomatic bladder disfuction. [Article in Spanish] Actas Urol Esp. 2008 Nov-Dec;32(10):1035-6.

ICA Update readers know about a case of an IC patient who had this type of fluid cyst on a sacral nerve root that apparently caused IC symptoms and pain.
Read more.

Epidemiology

PBS More Common in Older Women
Lifford KL, Curhan GC. Prevalence of Painful Bladder Syndrome in Older Women. Urology. 2008 Dec 30. [Epub ahead of print]

Unlike a previous analysis of the prevalence of IC/PBS from a very large population study, this analysis of a different study finds that the prevalence of PBS increases with age.
Read more.

Medical Education

Japanese Society Develops Guidelines for IC Diagnosis, Treatment
Homma Y, Ueda T, Ito T, Takei M, Tomoe H. Japanese guideline for diagnosis and treatment of interstitial cystitis. Int J Urol. 2009 Jan;16(1):4-16.

The need for standardized interstitial cystitis guidelines for diagnosing and treating IC has become very apparent over the past few years and has generated a lot of heated debates.
Read more.

From the ICA Mailroom
Sometimes I feel like giving up, and it's nice to know that the ICA is there for me. Keep up the good work and know that you are appreciated. Mark M.

RESOURCE MATERIALS

The ICA is your best source on the web for books, articles, transcripts and other resources covering all aspects of interstitial cystitis. Access the ICA Resource Materials Guide online or 800 HELP ICA (800-435-7422).

Please note that most items have two prices: member (discounts on most publications) and nonmember. Becoming a member of the ICA will pay off in the amount you can save on the many resources offered. For more information on joining the ICA and becoming a member click here.

UPCOMING CONFERENCES

PRODUCTS THAT CAN HELP YOU

Many types of over-the-counter (OTC) products can be helpful in relieving IC symptoms. Local pharmacies and supermarkets sell most. Some are only sold on the internet.

Check out the review of over-the-counter products on the ICA website.

• Supplements -- Relieve Bladder Symptoms
• OTC Drug Products -- Calm Flares
• Moisturizers & Cotton Tissues and Toilet Papers -- Sooth Irritated Skin
• Lubricants -- Enhance Intimacy
• Hot & Cold Packs -- Comfort Bladder Pain
• Personal Travel Urinals -- For Frequency and Urgency

For informational purposes, we provide brand names and links to product sites. These links may route you to commercial sites with promotional material not necessarily endorsed by the ICA.