From Stillwater-Ponca City (OK) Ostomy Outlook Sept 1996:

Report on Boston Conference

The 34th Annual UOA Conference was held in Boston Aug 7-10. My wife Marcia and I attended as our chapter's representatives. This was our first UOA Conference, and a great experience. I met several people whom I had known only by email, and made many other contacts. (Now, we'll exchange newsletters with many more chapters.) I learned a lot about the functioning of this organization, and attended many interesting and informative lectures and discussions--not to mention other fun events such as the Nu-Hope Fun Run/Walk, the ConvaTec Party, and the UOA Clambake (lobster dinner at the Boston Aquarium)!

In the formal part of the Conference, I attended sessions on chapter leadership, state of the organization, medical information, a rap session for people with "J-Pouch" surgery [I did have a J-Pouch before I reverted to standard ileostomy], and finally, the House of Delegates meeting. I was glad Marcia was present, because many sessions were held concurrently. On those occasions, I often attended "leadership" sessions while Marcia attended medical sessions. (I think she had more fun as a result!)

Early in the meeting, I learned that UOA intended a major promotional effort for World Ostomy Day, scheduled for Oct 5 of this year, and had supposedly sent a media promotion kit to all chapters. Some chapters are, in fact, planning special events such as Ostomy Health Fairs to coincide with this date. Unfortunately, we never received that mailing. It's too late for us to plan special activities for World Ostomy Day, but I have asked the UOA office to send us the media packet, and we will try to get this material to local newspapers and radio stations in Stillwater and Ponca City.

There was no formal session for newsletter editors at this year's Conference. But Barbara Hawes, editor of The Pouch from the Northern Virginia Chapter, organized an informal meeting of editors that we held during the Continental Breakfast in the Exhibit Hall after the Nu-Hope Fun Run. This was a lively discussion that generated good ideas (e.g., the importance of dating newsletter articles), but unfortunately, many editors at the Conference were not aware of this meeting.

On state of the organization: UOA currently has 538 chapters and about 35 000 members (median age slightly over 60 years). Ten chapters disbanded during the past year, and membership is currently decreasing about 5% per year. It was estimated that UOA would be out of business by 2005 if this trend isn't reversed. An increasing percentage of members are now "Association" members--who belong to the national body but not a local chapter.

(It was also reported that one chapter changed its name during the past year--namely us!)

The membership decline is partly because UOA has been so successful in improving the care and equipment available to ostomates (so patients don't need as much help). Other factors include increased numbers of continent procedures instead of standard ostomies, and changing lifestyles that make people less willing to serve as leaders in volunteer organizations. The diversification of ET Nursing (no longer devoted only to ostomy) and availability of help from other organizations pose additional challenges to UOA.

In spite of all these problems, there are surely many patients who can benefit from our help, but don't know we exist. Traditionally, UOA has tried to reach patients through the medical community. But many patients probably aren't getting the message that way. Therefore, UOA feels a need to market its services more directly to patients. Strategies considered by the UOA Executive include paid advertising, use of the Internet, and new membership categories.

On use of the Internet, I attended a meeting of the Public Information Committee devoted largely to this topic, one day before the formal start of the Conference. I'm glad I attended that meeting, because when I heard the UOA board members speak of the Internet, they referred only to the central web site from the national organization. I tried to emphasize the important role that individual chapters (like ours) are playing by providing a strong presence on the Internet, helping to promote UOA.

On paid advertising: The Public Information Committee proposed a one-time national ad in Parade magazine that would cost $82 000. That would have used up half of UOA's reserve fund, but was rejected by the House of Delegates. The Committee will now consider other options.

New Membership Classifications: Several new membership categories were proposed, including a 'lifetime' membership at $1000, and 'professional' memberships for physicians at $50/year and ET Nurses at $35/year. Only the professional membership for doctors at $50/year was approved by the House of Delegates. All of the proposed new categories would apply only to the National body, and would not confer membership in a chapter.

Deficit Budget: For the first time in UOA's history, the Delegates approved a budget with a deficit ($23 000). This happened because Delegates objected to a cut in the Field Services budget. I don't know what this will mean in practice, but in any case, UOA has joined the Federal Government by adopting a deficit budget!

On Advocacy: During the past year, UOA hired a consulting firm (Marc Associates) that monitors legislative and regulatory actions of interest to non-profit organizations like ours. This will be very important as we enter the new era of Managed Care. We returned from Boston with audio tapes of several of the sessions, including a session on Advocacy. We may wish to use these tapes in future Chapter meetings.

Central Dues Billing: UOA is strongly promoting this program, currently used by 82 chapters. However, most chapters prefer the greater personal contact that results when members send dues to their own chapter Treasurer.

Continent Procedures (pelvic pouches, continent urostomies and ileostomies) are increasingly performed instead of standard ostomies, and increasing numbers of patients with these procedues need help. However, most UOA chapters deal only with the old, classical ostomies. If the people with continent procedures can't find what they need in UOA, they will form their own, separate organizations. UOA's continued existence depends on being able to support these people within UOA. Fortunately, both current co-chairs of the Continent Procedures Committee (Ron Titlebaum and Peg Grover) are also on UOA's Board of Directors.

Another session I attended was the Area Meeting for the South-Central and South-Eastern regions. Our Area Service Director, Ross Hay, was not present at this Conference. However, I learned that many chapters have benefited from regional meetings and smaller 'cluster' meetings. To some extent, it seems that UOA wants to put more emphasis on regional meetings instead of the National Conference. Chapters that participated in cluster meetings have sometimes agreed to share resources, e.g., by holding joint Visitor Training.

Only one other Oklahoman was present at this year's National Conference in Boston, namely, Marcus Mullins of the Lawton Chapter. I sat next to Marcus at the House of Delgates, and this is one of the chapters we will now exchange newsletters with. However, I wish more Oklahomans had shown up in Boston!