Advocacy is promoting what is important to you and persuading others to support your cause. The most convincing advocate for UOAA is the individual who can talk about a personal experience with their ostomy surgery. No one knows better than you what living with an ostomy is like. You can make a real impact on decision-makers and together we can drive change. Go to our Action Center for ways that you can get involved at the grassroots level.
United Ostomy Associations of America, Inc. (UOAA) is the leading organization proactively advocating on behalf of all people living with an ostomy or continent diversion in the United States.
One form of advocacy that people may be familiar with is that of professional “patient advocates”. These advocates provide individualized services such as navigating the complex healthcare system including quality of care complaints, assisting patients with making difficult medical decisions, and helping with medical bills and insurance denials/appeals. UOAA is unable to be a personal “patient advocate” for each person with an issue.
However, when we say we “advocate for people who have had ostomy surgery” we accomplish this on a large-scale as the voice of our community through our Advocacy Agenda.
This agenda is grounded in the core values that form UOAA’s vision: A society where people with ostomies or continent diversions are universally accepted and supported socially, economically, medically, and psychologically.
Ensure public and private health insurance options, including those under the Affordable Care Act, Medicare, Children’s Health Programs, and Medicaid, provide affordable coverage and access to high quality healthcare services, technology, and products to meet the needs of people living with an ostomy or continent diversion so that they may participate fully in society.
Dispel the fear about undergoing this life-saving and life-restoring surgery and erase the myths, stigma and embarrassment that are sometimes associated with having an ostomy.
As UOAA’s Director of Advocacy, Jeanine Gleba raises awareness and advocates for those who have had or who will have ostomy or continent diversion surgery. Jeanine has her Masters degree in Education and over 20 years of experience of grassroots organizing including spearheading the efforts behind the successful passage of a New Jersey law named for her daughter Grace, which benefits thousands of NJ children who have hearing loss. She is an award-winning advocate most recently being honored as the recipient of UOAA’s President Award in 2023. Jeanine currently serves on the Digestive Disease National Coalition as Immediate Past Chairperson, and the NJ Audiology and Speech-Language Pathology Advisory Committee as a Public Member. Jeanine is passionate about inspiring others to self-advocate and make a positive change in their own lives, as well as in the lives of others.
Rebecca S. McElyea, MSN, RN, CWOCN is working in outpatient ostomy care at UNC Chapel Hill. She has lived with an ileostomy for 37 years, bringing personal experience alongside her professional expertise. She holds a Master of Science in Nursing Education and is passionate about patient advocacy and education. At UNC, she contributed to the PRISMS (Patient-Reported Outcomes-Informed Symptom Management System) eHealth study, designed to reach ostomates in rural and underserved communities with tools for symptom monitoring, self-management, and smoother transitions home after surgery. Rebecca also founded OstomyRN.org, a blog and resource hub that offers practical education and peer support. Through her work, she is dedicated to ensuring that all people with an ostomy (no matter where they live) have access to compassionate care, resources, and advocacy. Becky has been appointed as the Co-Chairperson for UOAA’s Advocacy Committee.
Joanna Burgess, BSN, RN, CWOCN is a full scope newly retired Wound Ostomy Continence Nurse (WOC Nurse). Joanna‘s contributions to WOC nursing include 10 years with the WakeMed NC system working with pre and post operative ostomy patients and she started the outpatient ostomy clinic affiliated with that system. She also worked for 5 years in industry with Convatec as a me+ clinical support nurse. Her other contributions include serving three years on the WOCN Society national ostomy committee where she helped in developing the "Pediatric Ostomy Complications: Best Practice for Clinicians". Her passion for ostomy care stems from her 60-year journey of living with an ostomy since the age of three. Joanna was the 2011 National Great Comebacks recipient and has shared her story on a state, national and international level. She was named the 2016 WOCN of the year for the southeast region of the United States. Joanna served on the board of UOAA for three years and has served as Chair of UOAA’s Advocacy Committee since 2016. Joanna sees herself as a bridge, bringing better understanding of the ostomy experience to both patients and care providers.
Diego Schaps, MD, MPH is a general surgery resident at Duke University pursuing a career in colorectal surgery with a clinical and academic focus on improving the quality of life of people living with ostomies. His work centers on advancing ostomy care through surgical education, interdisciplinary collaboration, quality improvement, and patient-centered outcomes research. His commitment to this field began early in life through conversations with his aunt, who lived with an ileostomy. As a young boy, he learned from her that an ostomy was simply a normal part of life - you either had one or you didn’t! Dr. Schaps has developed ostomy education programs for surgical trainees and medical students and has presented these initiatives nationally. He has also partnered with an interdisciplinary team to establish an ostomy-focused quality improvement program at the VA. He is committed to national advocacy efforts that expand access to high-quality ostomy care, reduce stigma, and ensure that all patients have the resources and support needed to live full and active lives. Through his service on the UOAA Advocacy Committee, he looks forward to strengthening the connection between patients, clinicians, and policymakers to improve care and outcomes for the ostomy community.
Susan Mueller, BSN a recently retired WOC nurse was an RN for many years and worked as a nurse and nurse case manager in a wide variety of health care settings with a focus on advocating for people with chronic illness and disability. She became a WOC nurse in 2008 and participated as a member of the WOCN Certification Board Evidence Based Practice Committee, in an industry ostomy focus group and as a WOC nurse preceptor. She has presented on topics of ostomy education and fistula management at local and regional conferences. Sue is a colostomate since 2004 and was very active in the Ostomy Association of Albuquerque before moving to North Carolina for retirement.
Please contact us to let us know the issues that are important to you at 1-800-826-0826 or email our Advocacy Manager at advocacy@ostomy.org. You can also follow our advocacy efforts on Twitter @UOAA_Advocate.
United Ostomy Associations of America
P.O. Box 2293
Biddeford, ME 04005-2293
Call us toll-free at: 1-800-826-0826.
Our Information Line hours are Monday-Friday, 9am to 3pm EST. If you have an emergency, please dial 911 or contact your local medical professional.
Please understand that UOAA is a private, nonprofit, advocacy and informational organization. We are not a medical facility and we do not have medical or legal professionals on staff. Therefore, UOAA does not provide Medical, Mental Health, Insurance or Legal Advice. Visit UOAA Virtual Ostomy Clinic provided by The Wound Company for non-emergency, virtual ostomy support.
