Urology Patients Of All Ages Benefit From New Bladder Health Awareness Campaign
Anyone working in the trenches of urology know just how difficult it is to plan a public relations campaign. Almost every press release sent out that asks a newspaper to do a story on interstitial cystitis, incontinence or bladder cancer ends up in a trash file. Simply put, bladder diseases are an uncomfortable topic for the media to cover. The Urology Care Foundation and the American Urological Association (AUA), along with a coalition of patient groups, are trying to change that by launching Bladder Health Awareness Month.
“Bladder Health Month is a great time to focus on connecting, educating and empowering individuals to take control of their bladder health,” said Richard A. Memo, MD, chair of the Urology Care Foundation. “Most Americans are still not yet talking to their healthcare provider about their bladder health symptoms because they are too embarrassed, but several bladder conditions can be treated through simple lifestyle changes, behavior modifications or diet and exercise.”
Each week of the November campaign spotlights different bladder conditions with the final four days dedicated to interstitial cystitis and neurogenic bladder.
November 1–5 | Incontinence, Overactive/Underactive Bladder and Stress Urinary Incontinence
November 6 –12 | Nocturia & Bedwetting
November 13–19 | Bladder Cancer
November 20–26 | Bladder Infection/Urinary Tract Infections
November 27–30 | Interstitial Cystitis & Neurogenic Bladder
Please note that this does not and will not substitute for the September IC Awareness Month campaign, nor is it officially recognized as “IC Awareness Week.” Rather, this is Bladder Health Awareness Month and we support this campaign enthusiastically! Any opportunity to raise awareness about bladder disease is good!
Points To Look Forward To
This campaign is very relevant to the interstitial cystitis community due to the considerable overlap of symptoms and interests.
- Some clinicians and researchers believe that overactive bladder is simply a mild form of IC/BPS where the patient struggles with frequency and urgency, but does not experience pain. OAB patients also often struggle with incontinence.
- It will be interesting to see what suggestions they have for patients who struggle with nocturia (nighttime voiding). We would bet good money that they’ll be suggesting that patients avoid bladder irritating foods (i.e. coffee, sodas, green teas, etc.).
- Did you know that the leading cause of bladder cancer is cigarette smoking?(1) Recent studies have found that the children of smokers experience higher than normal rates of bladder symptoms and distress.(2) Thankfully, there is no established connection between IC and bladder cancer though some patients have been misdiagnosed with IC before a correct diagnosis is made.(3) This is why a simple urine cytology test which screens for cancer is always performed during initial testing for IC.
- If there’s a scary topic in urology today, it’s the alarming discovery of the “superbug” isolated from the urine of a 49 year old Pennsylvania woman (4). Since last Spring, a total of four cases have now been identified in the USA.(5) This nightmare bacteria, an E. Coli infection resistant to Colistin, was first isolated in pigs, raw pork and some people in China. It was later discovered in Europe. It also been found in two pig intestine samples in the USA. (The US FDA is now rigorously testing pig samples.) The sad take-home message of this week should be the responsible use of antibiotics, especially in meat animals. We, as patients, MUST stop self-medicating with antibiotics for IC flares UNLESS a bacteria has been identified by culture. When in doubt, always ask for a culture first or, atleast, use a home UTI test kit.
- For IC/BPS, the hot topic is “sub typing.” Clearly, patients with Hunner’s lesions struggle with a unique disease identified via biopsy of the bladder wall. But thats only 10% of the patient population. The remaining 90% of patients fall into the category of chronic pelvic pain syndrome which can have up to nine distinct domains, including: muscular issues (i.e. pelvic floor dysfunction), neurological dysfunction (i.e. functional somatic syndrome), bladder injury (i.e. from chemotherapy, UTI or diet), psych-social struggles (i.e. anxiety, depression) and others.(6) We support Dr. Christopher Payne’s Five Proposed Subtypes for IC/BPS
History of IC Awareness Activities
The very first IC outreach activities began in the early 1980’s. According to Barbara Flanigan, the founder of the ICA of America (the original Interstitial Cystitis Association based in San Diego, CA), IC Awareness first began in the early 1980’s as a day in November. After a few years and challenges with the holiday season, it was moved to a day in October and eventually became IC Awareness Week. Ten years ago, Ortho Urology (makers of Elmiron) managed the entire campaign.
There were two key challenges with that arrangement.
- IC Awareness Week almost always centered around the promotion of Elmiron.
- The month of October and the limited media space for health awareness was dominated by the pink breast cancer awareness campaign.
Several years ago, Ortho Urology dropped all IC Awareness activities and no other company or non-profit (i.e. current ICA based in Maryland) continued the campaign. The IC Network stepped in the following year.
The first thing we did was to discuss the timing of the campaign. We all agreed that October was a terrible month for awareness given the market saturation of the pink breast cancer campaign. We asked patients to pick a better month and the majority agreed that September was an ideal time to do it! There were fewer health campaigns that month than other months and, with students returning to school, we thought that volunteers would have more time to get involved
The second thing that we did was expand the campaign from a week to a month to create plenty of opportunities for patients to be involved.
You might also be interested in knowing why the color of IC Awareness Month is turquoise/teal. About 15 years ago, we had another patient vote on the internet where about a thousand patients participated. They voted for the turquoise color because it had been used in the majority of IC educational materials up to that point and they wanted it to be consistent. Strangely and without any authorization from an IC group, someone designated a color for IC as dark blue in “official” lists. This has largely been abandoned in favor of the patient vote.
Is IC Awareness Month “official?” Yes, it is. Thousands of patients have been involved over the years. IC Awareness Month is not listed on the national calendar of awareness months because it does not, as yet, have a Presidential Proclamation. We’ve been working on that. However, we have had senate, congressional and state proclamations in past years.
- Surprising Link: Smoking and Bladder Cancer. Cleveland Clinic Health Hub. 22 October 2013
- Robert Wood Johnson Medical School. “Second-hand smoke affects bladder function in children, study suggests.” ScienceDaily. ScienceDaily, 7 June 2012.
- Nancy’s story – Bladder Cancer Advocacy Network. Accessed 11/4/16.
- Sun L. and Brady D. The superbug that doctors have been dreading just reached the USA. The Washington Post. May 27, 2016
- Scotti S. CDC announces 4th superbug case in US patient. CNN. September 9, 2016
- Osborne J. A new chronic pelvic pain terminology guide adds clarity for IC/BPS. ICN. Oct. 19, 2016.