UNITED OSTOMY ASSOCIATIONS OF AMERICA INC

Through our advocacy program we aim to improve patient outcomes and satisfaction across all healthcare settings, ultimately improving quality of life for those facing this surgery or living with an ostomy. In addition, we strive to remove restrictions on access to specialized care services by a certified ostomy professional, and access to ostomy supplies to ensure appropriate coverage and reimbursement. We want to increase the number of UOAA affiliated support groups and strengthen existing groups, creating an even a stronger support system throughout the U.S. for those living with an ostomy We provide educational resources and support to ostomates throughout their patient journey. We seek to increase public awareness of ostomy surgery and correct misinformation about this life-saving surgery.

In 2019 we launched our first-ever research study and are collecting survey results through the end of 2019 before the analysis stage.

Our Advocacy Committee creates and disseminates materials to educate those who make decisions within government, insurance providers, employers, regulators, and health care providers that affect the healthcare and well-being of people living with an ostomy and continent diversion. In addition, we advocate for policies and legislation that ensure people living with an ostomy or continent diversion receive quality health care that meets their needs. We develop toolkits to empower patients to be self-advocates and drive change. To achieve a stronger voice, we partner and collaborate with various coalitions as well as utilize the power of the patient voice. We provide resources online and reach out to new and current support groups with the tools they need. We continue to engage medical professionals and ostomy clinics in regions not currently ordering New Patient Guides. We organize a national conference and ostomy awareness events to educate the patient, caregiver, and community.

Our organization has a dedicated volunteer Advocacy Committee comprised of four certified Wound Ostomy Continence nurses and a patient advocate working to achieve our advocacy goals and assisted in their efforts by a full-time Advocacy Manager. In addition, we have over 300 affiliated support groups and an Advocacy Network of volunteers who want to make an impact across the country. We maintain a website, www.ostomy.org, with trusted and updated educational resources and a discussion board to answer community questions. A communications professional on staff distributes information needed by the community and engages people on social media providing a positive space for all those seeking ostomy resources and support. Our Support Group coordinator and volunteers help new and existing groups with questions and resources.

UOAA is recognized as a premier source for patient-focused ostomy information and peer support, and our resources are available to all. We have distributed 25,000+ NPGs in the past year. We recently revised and adopted the “Ostomy and Continent Diversion Patient Bill of Rights”, which was endorsed by numerous professional organizations. Our outreach with patients, caregivers and medical professionals continues to grow through publications and poster exhibitions at professional conferences. In 2018 we launched a new intuitive website and hosted 9 Ostomy 5k events along with a worldwide Virtual 5k. Since 2017 we have welcomed 55 new affiliated support groups. Future plans include a research project to gather measurable data to highlight best in practice with positive patient health outcomes in ostomy care, and updating educational resources such as the Nutrition Guide. We are seeking national recognition for Ostomy Awareness Day and want to increase the number of 5ks and donations.

In 2019 the new Eating with an Ostomy Guide was written, reviewed and launched and funds will be raised for it during Giving Tuesday 2019.