Ostomy Support Organizations Re-emerge

Gwen Turnbull, RN, MS, ET

M any members of the recently disbanded United Ostomy Association (UOA) — some who provide ostomy care, some who manufacture ostomy products — and people dealing with new ostomy or continent diversions believed this population’s needs could not go unmet. They took immediate action and through the dedication of various individuals (many previous UOA officers), organizations, and industries a new association of support groups for persons with an ostomy, continent diversion, or facing surgery was formed.

United Ostomy Associations of America, Inc.

The new group, the United Ostomy Associations of America, Inc. (UOAA), is a national non-profit organization incorporated in New Jersey. Managed by volunteers with professional assistance as required, this national network will link local independent ostomy support groups, including existing chapters of the UOA and other non-UOA support groups (eg, groups formed by a medical professional, hospital, or allied agency) into “affiliated support groups” (ASG).

The UOAA goal is to act as an umbrella organization for geographically focused support groups, continue to advocate regarding reimbursement and regulatory issues surrounding ostomy products and services, and provide not-for-profit status to the ASGs.

Organizers chose to keep “United Ostomy Association” in their name to continue the good will and government recognition of the work the UOA accomplished in the course of its 43-year history. The name “UOA” is perceived as an asset that would take a new organization years and a great deal of effort to duplicate.

The UOAA’s member groups — not individuals — will be the ASGs. Planners believe it is more cost-effective to keep track of 300 to 400 groups rather than 20,000 individuals. Affiliation fees will be waived this year through 2006, after which each ASG will be asked to pay an annual affiliation fee of $2 for each member in their group. Each ASG is expected to have an active patient visitation program.

The evolving UOAA website (www.uoaa.org) should have considerable content by the time this article is published. Plans for the website include discussion boards; 24/7 chat, reimbursement, and regulatory information related to ostomy supplies and services; and content directed at various age groups and surgery types. The Advocacy Hotline continues to be available at www.advocacy@uoaa.org. A toll-free telephone line manned by a “live” trained volunteer capable of answering questions, providing information, helping resolve individual issues, and providing referral to a local UOAA ASG also is planned.

The UOAA’s conferences will be held annually and alternate between Regional and Annual meetings. The first Regional Conference will be held in 2006 and the first National Conference will be held in 2007.

In order to manage more cost-effectively, the UOAA will have no paid administrators nor be a “bricks and mortar” organization. It will exist “virtually” via telephone and the Internet. For more information about the organization, contact Ken Aukett, President of the UOAA Organizing Steering Committee, at kenaukett@uoaa.org.

The Phoenix Rises from the Ashes

The final edition of The Ostomy Quarterly (OQ) was published but because many people found the magazine to be such a helpful resource, the UOAA contracted with the former editor of OQ (Ian Settlemire) to develop and publish a new quarterly magazine. The first issue of The Phoenix — the official publication of the UOAA— will be mailed free of charge to all previous UOA members and WOC nurses at the end of 2005. WOC nurses have been designated recipients to underscore the continuing and critical need to provide a venue for persons with an ostomy or facing surgery to talk to other persons with an ostomy. The UOAA and The Phoenix can be vehicles to fulfill that need. After the initial mailing, The Phoenix will be provided on a subscription only basis ($25 per year) to UOAA affiliate members as well as other interested parties. Membership in an ASG does not include a subscription to The Phoenix. Ostomy manufacturers and suppliers have pledged their support to this new publication.

Subscription revenue will be distributed equally between the UOAA and the publisher.

Youth Rally Committee, Inc.

The UOA’s Youth Rally has spun off to the Youth Rally Committee, Inc. and will be headed by an all-volunteer administration. Eight dedicated counselors will volunteer at the 2006 Youth Rally at San Diego State University, San Diego, Calif., on July 8-12, 2006. This endeavor is supported by angel funding and donations from ConvaTec, a Bristol-Myers Squibb Company.

Parents’ Network

The UOA Parents’ Network has spun off into the existing Pull-thru Network that will be one of the non-geographic ASGs.

Kudos

The dedication of the volunteers of these various new organizations and the support displayed by the ostomy community deserve recognition as examples of the importance of education and support to quality of life and rehabilitation of the ostomy patient. People living the ostomy experience understand and are committed to ensuring that care and support are provided to as many people as possible. We applaud these volunteers and offer our thanks to all who have demonstrated their commitment of time, funds, and energy.

The Ostomy Files is made possible through the support of ConvaTec, a Bristol-Myers Squibb Company, Princeton, NJ.

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