To raise awareness about interstitial cystitis and chronic pelvic pain for patients, providers and the community around the world. Why? Some patients are still being told that IC isn’t real or is all in their heads. Despite more than $100 million dollars in research, most medical care providers (especially ER staff) still lack knowledge about IC. Patients often struggle to find any health care. This campaign empowers and educates those patients AND gives them high quality written materials that will help educate doctors in their nation and community as well.
IC Awareness Month History
According to Barbara Flanigan, the founder of the ICA of America (the original ICA 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 (i.e. Elmiron) managed the entire campaign by using very good marketing companies.
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. About six years ago, Ortho dropped all IC Awareness activities and no other company or non-profit (i.e. ICA) stepped in to develop a campaign. The IC Network stepped in to run the campaign 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 breast cancer articles and activities. 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.
Our Approach To Awareness
IC Awareness Month is modeled after National Women’s Health Week. Its goal is to empower patients to be active in their local towns and states, as well as through the internet. It’s a “ground up” rather than “top down” approach because it’s impossible for a national organization to understand the challenges facing small communities and states.
We do this by providing useful materials and ideas that that patients can use in their own communities, including:
- Press releases that they can send, with their own personal story, to local community papers
- Proclamations that they can give to their city council or state & federal representatives to ask that IC Awareness Month be recognized officially. When this happens, it almost always also leads to articles about IC in local and regional papers. They are surprisingly easy to do too!
posters that they can place on local community bulletin boards and their doctors
- Fact sheets & Educational Materials about IC that they can distribute
- Fundraising for IC research – whether it be a walk or a garage sale, every dollar helps. We do NOT collect any money at the national level. We ask that individuals and groups make direct donations to researchers in their state and/or one of the larger national IC research centers. (Beaumont Hospital).
- Patient Contests
Every IC organization in the world, as well support groups, are invited and welcome to participate as long as they don’t try to change any of the key constructs.. i.e. the color, name and theme.
IC Awareness Month celebrates patients. We want to encourage patients to speak out, be involved, get active and try to make a difference. Why? Because many patients feel so helpless and that they can’t make a difference. We disagree. They can send in a press release. They can tell their story. A support group can do a regional conference.
Our campaign says “yes” to patients who want to be involved, regardless of their affiliation. Together, we can make a difference.