United Ostomy Associations of America (UOAA) has the most amazing Advocacy Manager, and I want to acknowledge her latest accomplishment. Jeanine Gleba and I met several years ago when she took her very important position, and I was growing the Union County Ostomy Support Group in New Jersey. We immediately connected and she invited me to accompany her to meet with Congressional aids through the Digestive Disease National Coalition; she was very enthused when I reported that Overlook Medical Center in Summit would have an Outpatient Ostomy Center. There have been many times when I reach out to her to lament the poor treatment ostomates experience, and I can always count on her to hold my hand or talk me off the ledge! Additionally, she invited me to participate on the Patient Advisory Board of UOAA, and we have a special friendship. We both know we can call upon each other, and are of like minds when it comes to Ostomy Awareness and Advocacy.

Recently, Jeanine was successful in arranging a meeting with the Food and Drug Administration (FDA) Center for Devices and Radiological Health (CDRH) to discuss ostomy prosthetic devices. Ostomates use prosthetic pouching systems. She arranged a panel of ostomates to share the patient perspective with this group within the FDA, which facilitates medical device innovation, as well as assures patients and providers have timely access to safe, effective, and high-quality medical devices.

Our goal was to educate the FDA about the needs and challenges of our historically underserved patient population so that the FDA understands what is important to the ostomy community when ostomy medical products are being developed and approved.

We each had five minutes to speak and those minutes went quickly. I have a prototype of a stoma from my friends at Stomagenics (thank you, Theresa and Bruce Johnson.) It features the ability for those unfamiliar with ostomy to visualize our anatomy. After the FDA introductions, I had the opportunity to demonstrate, since we know one picture/image is worth a thousand words. We were pleased the FDA was very open to hearing us and seemed to learn a great deal based on their questions. The energy was extremely positive all around.

The key to any successful advocacy is engaging and helping others to visualize and understand what is necessary to make life better. Ostomy is an equal opportunity situation, in that one may know of someone or experience it in their lifetime. Causes for an ostomy include a disease process, such as cancer, Crohn’s disease, ulcerative colitis, or diverticulitis; a mechanical issue, like mine, which is dysmotility; or trauma, such as an accident. The reasons may be many, but this lifesaving surgery is a preeminent procedure, and we know how fortunate we are to have it.

We also know how fortunate those of us with an ostomy are to have United Ostomy Associations of America behind us, and Jeanine Gleba leading the way toward education and awareness. There are 750,000-one million of us in this country, and we all have one thing in common…gratitude for this miracle!

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