The Ostomy Files: United Ostomy Association to Cease Operations
After 43 years of providing volunteer and educational services to thousands of people of all ages living the ostomy experience, the United Ostomy Association’s (UOA) Board of Directors has voted to cease the organization’s operations effective September 30, 2005.
The UOA was founded in 1962 and became one of the largest self-help, self-governing organizations in the country. It emerged at a time when ostomy surgery and the availability of adequate ostomy supplies were lacking or simply non-existent — patients were left to survive on their own. The profession of “Enterostomal Therapist” was only a few years old and the number of trained ET “technicians” was extremely small.
Patients with inflammatory bowel disease and bowel and bladder cancer, as well as postoperative patients with a new ostomy, remained in the hospital for weeks or even months. During these extended hospitalizations, a volunteer visitor from the UOA often provided the only teaching and support available to the patient and family, in many cases introducing them to available ostomy pouching systems. Local chapters of the organization evolved to provide support in towns and communities. At its height, the UOA had more than 45,000 members with nearly 600 local chapters all over the US and Canada.1
As the organization grew, so did the number and types of services provided In 1981, the UOA Registry (UOAR) established a data base from a large cohort of UOA members in an effort to evaluate the quality of life of a person with an ostomy and trends in ostomy surgery; it also provided a population base for potential research projects.1 The registry of 16,470 patients was maintained on the mainframe computer at the Jewish Hospital (now Barnes-Jewish Hospital) of St. Louis in the Division of Colon and Rectal Surgery at Washington University. To this author’s knowledge, the publication of its data in 19911 remains one of the largest and richest to date.
Besides the volunteer UOA Visitor Program, other services were developed to meet specific patient needs and fill gaps in information and services. These programs and services included an annual National UOA Conference, regional conferences, the UOA Youth Rally, publication of The Ostomy Quarterly and many other professional and consumer educational brochures, The Insider Newsletter, fund raising campaigns, and aggressive and successful advocacy programs to improve access to and coverage of ostomy supplies provided by private and public healthcare plans. Most recently and in an effort to attract younger members, the organization developed a series of Networks customized to the needs of particular ages and interest groups. The UOA responded to the times by developing a comprehensive, well managed, and constantly updated website with valuable links.
Sadly, these efforts were not enough to protect the organization from changes in healthcare delivery and the emergence of new technologies, both in the operating room and in manufacturers’ research and development laboratories. Fewer and fewer permanent ostomies are being performed now that newer continent procedures are available. Much of the educational information provided to patients by the UOA is available online and through manufacturers’ customer service departments manned by RNs and WOC Nurses.
Further complicated by HIPAA regulations and shortened lengths-of-stay, the UOA Visitation Program has experienced a decline in the number of calls for their services. Fewer and fewer WOC Nurses provide ostomy care (reported by the UOA to be only 20% of their time2), join the UOA as members, or provide donations of time and/or money. In fact, only 10% of UOA members responded to fund raising campaigns with a donation and only 12% of the chapters donated to other programs such as the Youth Rally. Revenues are simply no longer adequate to support the activities of the organization.
In addition, UOA membership has steadily declined to 21,000 over the past decade — a mere 3% of the market share of potential members2 — and continues to decline at about 4% per year. Organization chapters have dwindled from 600 to 350, with more than 35 disbanding in 2004. The organization’s outlook was grim and the Board of Directors was forced to examine the reality of the situation and the options available to them. The Board felt it had no choice other than to close the organization.
Until the official end of business on September 30, 2005, the UOA will continue to provide its full range of services and programs. At the end of business on September 30, the National Office of the UOA will close its doors for good. The final issue of The Ostomy Quarterly will be mailed in October 2005.
The doors of the UOA National Office may close on September 30, 2005, but the thousands and thousands of doors that have been opened to individuals with an ostomy by the UOA in the past 43 years will never be forgotten. Thank you, members and volunteers of the United Ostomy Association, for the years of loyalty, dedication, service, and love.
1. Fleshman JW, Lewis MG. Complications and quality of life after stoma surgery: a review of 16,470 patients in the UOA data registry. Seminars in Colon & Rectal Surgery. 1991;2(2):66-72.
2. Arnold D. End of an era. Available at: www.uoa.org. Accessed June 29, 2005.
