Cafe ICA February 2009 ~ volume 9, number 2
IC medical highlights, self-help and coping strategies, and ICA news
I used your website to help write an IC lecture. I had never heard of IC in Physician Assistant school and I wanted to make sure that my students did not have the same experience. It is one of the best websites I've ever seen. I did cite the website, address, and phone number in my lecture references according to the website policies. I will also refer to the excellence of the website during my lecture for both professionals and patients. AG, PA-C (Physician Assistant)
Health and communications expert, Dr. Holly Atkinson, has been named to the board of directors of the Interstitial Cystitis Association (ICA). Currently serving as the chief of medical affairs for HealthiNation and co-director of the Advancing Idealism in Medicine Program at Mount Sinai School of Medicine, Atkinson brings more than 25 years of communications, nonprofit and medical experience to the ICA.
Read more.
The Multidisciplinary Approach to Pelvic Pain (MAPP) Research Network held it’s third meeting on February 3 and 4, 2009, in Santa Monica, California. The network, as NIH press releases describe, is taking an innovative approach to research. Much of this meeting was devoted to discussing how to manage that innovative process.
Read more.
President Barack Obama signed the American Recovery and Reinvestment Act (ARRA) on Tuesday, February 17, 2009. Of the nearly $800 billion, $24.7 billion is dedicated to subsidizing health care insurance premiums for the unemployed through the Consolidated Omnibus Budget Reconciliation Act (COBRA) program. Through COBRA, the federal government will subsidize up to 65 percent of health insurance premiums for nine months for workers laid off between September 1, 2008 and December 31, 2009, who earned up to $125,000 ($250,000 for families). If you have pre-existing conditions, such as IC, that may preclude you from qualifying for other types of coverage, you can stay on COBRA at the reduced rate for nine months. See the ICA website for a quick review of the new COBRA qualification requirements. Or, go to the US Department of Labor website for detailed information about COBRA changes.
Other health-related areas that received funding from the ARRA include:
- Medicaid: $86.6 billion to help State governments
- Health information technology systems: $19 billion to modernize computer systems
- National Institutes of Health: $10 billion for research and facilities projects
- Prevention and wellness programs: $1 billion to encourage healthy lifestyle choices
ICA Call to Action: Get Involved! Learn more about the ARRA. Find out how funds are being distributed through Federal agencies. As the government rolls out stimulus dollars, check back and see which states, congressional districts, and Federal contractors receive stimulus dollars. Also, access the complete American Recovery and Reinvestment Act online.
ICA Patient Advocate, Linda Salin and over 450 women (plus a few men), attended the Sisterhood Health Forum on February 19 in Trinity, Florida, a suburb of Tampa. The Accidental Sisterhood, developed by Ray Bologna, MD and Jennifer Heisel-Mangano, MS, PT, focuses on treating urinary incontinence, overactive bladder (OAB), and prolapse. Dr. Bologna, a urologist from Akron, Ohio, also has a special interest in IC. Many hands shot up when Dr. Bologna asked if anyone knew what IC was and many participants asked Linda for more information about IC. With the goal of educating the public about women’s pelvic health issues, Bologna and Heisel-Mangano sponsor several national forums, offer an informative website, and publish books and DVDs.
?
Did y
ou know that the ICA's website is Health on the Net (HON) certified? The Health on the Health Foundation Code of Conduct (HONcode) for medical and health websites addresses one of the internet's main healthcare issues: the reliability and credibility of information on websites.
Read more.
The ICA seeks your input on this important question. Please join other ICA website users and share your experience about IC flares. If you have not already, go to the ICA's home page and complete the “Quick Survey” on the ICA home page. Responses thus far, from more than 260 survey respondents include:
- Sudden increased intensity of symptoms (37) -- 13%
- Subtle worsening of symptoms (10) -- 3%
- Dramatic increase in IC symptoms across several hours (19) -- 7%
- Period of extreme pain with increased urinary frequency/urgency across several days or weeks (49) -- 17%
- Worsening of symptoms from baseline (9) -- 3%
- All of the above (167) -- 57%
The March 2009 issue of Prevention magazine highlighted IC in an article addressing the risks of relying solely on self-diagnoses and self-help measures. Written by Laurie Tarkan, the article Are You Your Own Worst Doctor?, discusses how -- given today’s ready access -- many people turn to the internet and over-the-counter medicines for answers to health problems instead of seeking the care of a healthcare provider.
Read more.
Pain Societies Issue Chronic Pain Treatment Guidelines.
In February 2009 the American Pain Society (APS) and the American Academy of Pain Medicine (AAPM) published guidelines to assist clinicians in prescribing opioid pain medicines for patients with chronic non-cancer pain. The guidelines appear in the February issue of APS’s peer-reviewed publication The Journal of Pain. View the APS press release.
US News & World Report Takes on Chronic Pain Issues. The February 10 edition of US News & World Report featured the article Finding Effective Treatment for Your Chronic Pain by January W. Payne. Payne covers the latest developments in chronic pain management and interviews patients as well as some of the top pain specialists in the US. The article is available in its entirety, free-of-charge. Check out others’ opinions and post your thoughts regarding the article and the treatment of chronic pain in the comments section.
US Government to Increase Monitoring of Pain Medicines. On February 9, 2009, the US Food and Drug Administration (FDA) announced plans to further monitor the prescribing of opioid pain medicines. The FDA plans to review about two dozen medicines including brand name and generic versions of morphine, oxycodone, fentanyl, and methadone. Based on their findings, the FDA may require additional warning labels, physician instructional materials, or stricter prescription indications. Dr. John Jenkins, director of the FDA's Office of New Drugs noted that the effort is "a relatively massive new program" established because "the rates of misuse and abuse [of opiates] have risen over the past decade." Read more and post your comments.
IC Center in India Launches New Website. A new website offers information on IC diagnosis and treatment in India. The site is sponsored by the Interstitial Cystitis Center located at the Kidney and Urology Hospital in Ahmedabad, India, which is headed by Dr. Nagendra Mishra.
Read more.
Attention British Citizens! If you are a British citizen, consider urging the British Prime Minister to allocate funds to IC research. Sign petition here.
European Patients’ Rights Day. 
Planning to spend spring break in Europe? Want to learn how patient advocacy works on the continent? On April 18, across Europe, patient groups will be taking part in the 3rd European Patients’ Rights Day, attending meetings with their government legislators. Many of our sister organizations in Europe that represent IC and related conditions participate in this special event. Show your support by signing the online petition to officially establish April 18 as the annual European Patients’ Rights Day.
You are a lifesaver. I have read a little bit about this and it sounds exactly like what my problem is. I can't thank you enough. Melissa
The FDA approved Watson Pharmaceutical’s GELNIQUE (oxybutynin chloride) Gel 10% for the treatment of overactive bladder (OAB) with symptoms of urge urinary incontinence, urgency, and frequency. It is the first and only topical gel of its kind for OAB. The GELNIQUE Gel’s active ingredient, oxybutinin, a type of anticholinergic/antispasmodic commonly found in oral OAB treatments, is delivered through the skin (transdermally), thus reducing some of the bothersome side effects (dry mouth, constipation) known to occur with the use of oral anticholinergics.
GELNIQUE is a quick-drying, clear and colorless, fragrance-free hydroalcoholic gel that is applied once daily to the thigh, abdomen, upper arm, or shoulder and delivers a consistent dose of oxybutynin through the skin over a 24-hour period. Because of GELNIQUE Gel’s high safety and tolerability during clinical studies, the medicine is now being considered first-line therapy for OAB.
Read More.
Interested in keeping an eye on the latest potential IC diagnostic, treatment, and device discoveries? Go beyond websites searching PubMed for published IC research or ClinicalTrials to learn about IC studies. A quick search for “interstitial cystitis” at Fresh Patents, a commercial site listing the latest published US patent applications, resulted in 14 pages of IC-related patent applications! Here is just a small sample of the most recent ones:
FreshPatents lists applications weekly before the US Patent and Trademark Office offers their decision to grant or deny the patent. To learn more, check out the US Patent and Trademark Office site and stay ahead of the game when it comes to knowing all that you can about IC.
In January 2009, the FDA approved the antidepressant milnacipran (Savella) for the treatment of fibromyalgia, one of the frequently diagnosed related conditions in people with IC. In clinical trials, the drug reduced pain intensity by about 50 percent, and fatigue. A norepinephrine serotonin reuptake inhibitor (NSRI), Savella contains a higher ratio of norepinephrine to serotonin activity than serotonin-norepinephrine reuptake inhibitors (SNRIs), which is thought to make it more active against pain. Savella is the third prescription medicine to be FDA approved for the treatment of fibromyalgia. Pregabalin (Lyrica), an anticonvulsant, was approved in June 2007 and Cymbalta in June 2008. Savella has been available in Europe and Asia for many years, and is licensed by Pierre Fabre and Cypress Bioscience, Inc. and Forest Laboratories, Inc.
Read More.
A word of caution for people with IC: Dysuria (painful or difficult urination) is a possible side effect of Savella. Also, the effectiveness of these newer classes in IC is still being explored. Some people with IC find these newer types of antidepressants (e.g., duloxetine hydrochoride (Cymbalta), escitalopram (Lexapro), bupropion (Wellbutrin), and sertraline (Zoloft) helpful, while others report increased IC symptoms.
Many people have trouble keeping track of their medicines and remembering when to take them. A pill card is a simple, visual way to show all of the medicines that a person needs to take on a regular basis. The Agency for Healthcare Research and Quality (AHRQ), a Division of the US Department of Health and Human Services (US HHS), developed a Pill Card Tool. Using AHRQ’s easy-to-follow instructions, the ICA designed a sample pill card for a prototype IC patient, Dana Smith, who takes pentosan polysulfate sodium (Elmiron), amitriptyline (Elavil), and diazepam (Valium) for IC and pelvic floor dysfunction (PFD).
Read More.
Want to learn more about advocating for the medicine needs of your family members? Check out Medicine Safety: A Toolkit for Families. Promoting “better health through better medicine communication,” this toolkit offers practical information about:
- Avoiding misuse of medicines
- Getting the facts about your family’s medicines
- Keeping a family medical record
- Safe medicine use in children and older adults and during pregnancy
- Questions to ask your health team
The Center for Improving Medication Management (The CIMM) and National Council on Patient Information and Education (NCPIE) developed the toolkit to offer consumers of all ages access to information and educational resources that promote safe and appropriate medicine use. The ICA is a member of the NCPIE.
The National Health Council (NHC), a nonprofit organization providing a united voice for people with chronic diseases and disabilities, launched a new online community aimed at making health care better. Hoping to bring people together to create a united voice in support of healthcare policies that meet the needs and goals of individuals with chronic diseases and disabilities and their family caregivers, the site is free and easy to join.
The ICA is a NHC partner organization and pleased to let you know about the Campaign to Put Patients First. This initiative offers patients a place to share personal stories, sign NHC’s Petition for Change, contact elected officials, and learn about NHC’s public policy decisions. A Resource Directory is also planned. This will be a dynamic service where people with chronic diseases and disabilities and their family caregivers can find links to various resources -- including the ICA.
Click here to sign up.
Treatments/Drug Discovery
Botox Injections in the Pelvic Floor Can Ease Hard-to-Treat Pelvic Pain
Abbott J, Med Hons B. The Use of Botulinum Toxin in the Pelvic Floor for Women with Chronic Pelvic Pain-A New Answer to Old Problems? J Minim Invasive Gynecol. 2009 Jan 21. [Epub ahead of print]
Botulinum toxin (Botox) injections into the pelvic floor as a treatment to relieve pelvic floor muscle spasm and pain is a treatment that is still in its infancy, but early research suggests it may have an important role for women whose pelvic pain doesn’t yield to currently available treatment, said these authors.
Read more.
Social Issues
IC/PBS and CP/CPPS Are Costly Conditions
Clemens JQ, Markossian T, Calhoun EA. Comparison of Economic Impact of Chronic Prostatitis/Chronic Pelvic Pain Syndrome and Interstitial Cystitis/Painful Bladder Syndrome. Urology. 2009 Feb 2. [Epub ahead of print]
This study, which the ICA reported on from the American Urological Association’s annual meeting in 2007, has now been published.
Read more.
Basic Research
Gene Expression Profiles Could Lead to Diagnostic Test
Tseng LH, Chen I, Chen MY, Lee CL, Lo TS, Lloyd LK. Genome-based expression profiles as a single standardized microarray platform for the diagnosis of experimental interstitial cystitis: an array of 75 genes model. Int Urogynecol J Pelvic Floor Dysfunct. 2009 Jan 20. [Epub ahead of print] AND Tseng LH, Chen I, Chen MY, Lee CL, Lin YH, Lloyd LK. Genome-based expression profiles as a single standardized microarray platform for the diagnosis of bladder pain syndrome/interstitial cystitis: an array of 139 genes model. Int Urogynecol J Pelvic Floor Dysfunct. 2009 Feb 13. [Epub ahead of print]
These researchers are studying the expression of various genes in IC bladder linings.
Read more.
Nerve Type that Responds to “Hot Pepper” Pinpointed
Malin SA, Christianson JA, Bielefeldt K, Davis BM. TPRV1 expression defines functionally distinct pelvic colon afferents. J Neurosci. 2009 Jan 21;29(3):743-52.
The nerve receptor that responds to hot pepper-like substances is a focus of IC research because of its potential as a pain treatment target.
Read more.
IC Cats Have More Sensitive Bladder Coating
Ikeda Y, Birder L, Buffington C, Roppolo J, Kanai A. Mucosal Muscarinic Receptors Enhance Bladder Activity in Cats With Feline Interstitial Cystitis. J Urol. 2009 Jan 19. [Epub ahead of print]
Both calcium ions and muscarinic receptors (which overactive bladder drugs act on) can affect bladder contractions and spasms.
Read more.
Critical Step Discovered in APF Effects on Bladder Cells, Genes
Planey SL, Keay SK, Zhang CO, Zacharias DA. Palmitoylation of Cytoskeletal Associated Protein 4 by DHHC2 Regulates Antiproliferative Factor-mediated Signaling. Mol Biol Cell. 2009 Jan 14. [Epub ahead of print]
This basic research has discovered a critical step in how antiproliferative factor (APF) acts on bladder lining cells.
Read more.
Medical Education
IC Experts Inform through Global Clinical Journal
Forrest JB, Moldwin R. Diagnostic options for early identification and management of interstitial cystitis/painful bladder syndrome. Int J Clin Pract. 2008 Dec;62(12):1926-34.
For a worldwide readership of clinicians, these two IC experts discussed the pros and cons of different diagnostic methods and laid out treatment options, including oral medication, bladder instillation, dietary modification, and physical therapy. This paper is available free-of-charge online.
Read more.
Medical Student Urges Training in IC
Hazzard MA. A medical student perspective on interstitial cystitis: a view from the womb. Int J Clin Pract. 2008 Dec;62(12):1825-6.
In this editorial, a fourth-year medical student describes his experience studying IC and the stark contrast with his medical education, in which IC was barely mentioned.
Read more.
|
Your generosity allows us to continue to serve the 1.3 million people with IC.
Every day, people with IC tell us that the ICA is their lifeline -- often their only place to turn for critically needed support and information. The ICA needs your help to continue to serve the needs of IC patients, healthcare providers, and researchers.
Donate online or call 800-HELP ICA (800-435-7422)
The Interstitial Cystitis Association is an independent, registered nonprofit organization that relies upon private donations to fund its programs (including its own research program), services and distribution of educational materials.
Your contributions are tax-deductible to the fullest extent allowed by law. |
A huge thank you to all of you for the website and providing answers for us! It helps to have a place to go with my many questions and makes me feel a little better about coping with IC. Thanks again! - Candie K.
The ICA is your best source on the web for books, articles, transcripts and other resources covering all aspects of interstitial cystitis. To order, 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.
|
Society for Urologic Nurses and Associates (SUNA) 2009 Annual Symposium
San Francisco, CA
http://www.suna.org/
|
|
|
|
|
9th International IACFS/ME Conference:
Developing Interdisciplinary Collaborations
Peppermill Resort, Reno, Nevada
http://www.iacfsme.org/IACFSMEConferenceMoreInfo/tabid/221/Default.aspx |
|
| |
|
American Urological Association Annual Meeting
Chicago, IL
http://www.aua2009.org/
|
|
| |
| |
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.
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.
|
Disclaimer: The ICA does not engage in the practice of medicine. It is not a medical authority nor does it claim to have medical knowledge. In all cases, the ICA recommends that you consult your own physician regarding any course of treatment or medication.
© 2009 The Interstitial Cystitis Association. All Rights Reserved.
|
|