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“Living with IC/BPS” Highlights HCP-Patient Relationships as Key to Successful Diagnosis and Disease Management
Communication, collaboration can reduce barriers to treatment

Nov. 1, 2017 — The Interstitial Cystitis Association (ICA) released today a video that brings awareness to the difficulties faced by patients with interstitial cystitis/bladder pain syndrome (IC/BPS) and guides healthcare providers and patients in working collaboratively to ease some of these struggles.

The video, “Living with IC/BPS” was developed as part of Bladder Health Awareness Month, observed every November to educate patients and healthcare providers on several bladder health conditions that affect millions of Americans year-round.

Viewers will meet Amy Macnow, a patient with IC/BPS who has been dealing with the condition for several years. During a follow-up visit with her doctor, Amy narrates how the disease has affected her life and provides some guidance on managing IC/BPS. In addition to living with uncomfortable physical symptoms of bladder pain and urinary frequency, Amy describes the emotional side effects that have impacted her life, ranging from anxiety in social situations to frustration in seeking an effective treatment.

The video also features Dr. Lenore Ackerman, a urologist with Cedars-Sinai Medical Center in Los Angeles. Dr. Ackerman advises that healthcare providers should acknowledge that the patient’s bladder pain is real, and have an ongoing dialogue to find a treatment approach that works for each patient. She emphasizes that many patients will have seen several doctors prior to diagnosis and may be coming into the situation with feelings of guilt or confusion.

“There’s so much of that, ‘This is all my fault. This is in my head. Why can’t I just be better?’” says Dr. Ackerman. “Some of that gets reinforced by the medical community. […] And I think the first thing I do is shut that down and say, ‘There’s no judgement. There’s no blame. This [IC] is real.’”

The seven-minute video can be accessed at http://icbpstips.com. The website also features Bladder Health Awareness Month materials from ICA, including tip sheets for healthcare providers and patients with IC/BPS.

The video and tip sheets were developed in partnership with Aquinox Pharmaceuticals, Inc. as part of their efforts to bring attention to the needs of patients with IC/BPS and provide tools to enhance the dialogue between health care providers and patients.