Hear Our Roar

By UOAA Advocacy Manager Jeanine Gleba

When thinking of UOAA I am often reminded of William Shakespeare’s quote from A Midsummer Night’s Dream: “Though she be but little she is fierce.” United Ostomy Associations of America (UOAA) is a small national non-profit organization run by a dedicated volunteer Board of Directors with limited funding and a majority part-time 7-person staff. However, we are proud to be the leading organization advocating for the ostomy and continent diversion patient communities in the United States! We use several strategies to ensure our voices are heard including but not limited to:

1. We have a growing (2000) Advocacy Network of grassroots advocates who take time out of their busy schedules to take action when called upon to do so. They help us amplify our message! Please join our Advocacy Network. It’s a simple way to wet your feet in the advocacy world and doesn’t require a major time commitment.

2. We know we are stronger in numbers. UOAA is a member of several coalitions including the Access and Care Coalition, Digestive Disease National Coalition (DDNC) and the Safe Step Act Coalition where we share common goals and work together to achieve them. For example, the DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care in order to promote the best possible medical outcome and quality of life for current and future patients. Although UOAA is unable to have its own “ostomy” lobby days or fly-ins on the Hill (due to financial limitations), we are an important part of the annual DDNC Spring Public Policy forum. Ostomy advocates join forces with other digestive disease advocates to meet with Congressional staffers to share their stories and ask for support of our federal legislative priorities. These coalitions submit joint letters of requests or support/opposition to Congressional leaders and key regulatory decision-makers. An example of power and strength in numbers is the Safe Step Act Coalition which now comprises 215 patient organizations all advocating for passage of this important piece of legislation!

3. As a national organization we also develop position papers on topics concerning people living with an ostomy or continent diversion. These important documents might give background information, description of the impact on our community, and in some cases, advocate for change. We use them when talking to key decision-makers such as your elected officials, the media, or anyone who wants to know more about where UOAA stands on the topic/issue. An example of one of our position statements is our opposing stance on the cost-shifting tactic called “non-medical switching” of ostomy prosthetic supplies. Oftentimes, these papers include patient testimonials from the ostomy community to strengthen our message. You’re invited to share your story with UOAA and give permission for potential use in an advocacy effort.

4. We build relationships with like-minded organizations and collaborate on efforts that will benefit our collective groups. For example we frequently partner with both the Wound Ostomy Continence Nurses Society and Certification Board.

5. UOAA has a unique patient perspective and first-hand knowledge of the patient access issues facing the ostomy population. We are the trusted go-to source for ostomy information. We are compelled to take initiative and reach out to government agencies and Congressional Committees to share our views and extend the invitation to use us as a resource if they have any questions or if we can help in any way to move things forward. For example, in April 2023 we requested and attended a Patient Listening session with the FDA Center for Devices and Radiological Health (CDRH) Patient Engagement team to educate the FDA about the needs and challenges of this particular historically underserved patient population. We believe the FDA needs to understand what is important to the ostomy community when ostomy medical products are being developed and approved.

6. With regards to our federal priorities, 2023 was the start of the 118th congressional session. UOAA supports several bills related to the ostomy and continent diversion patient communities’ underlying medical conditions such as colon cancer or inflammatory bowel disease. Using the weight of our entire organization, we contact politicians via letters and in-person meetings to garner co-sponsors and “yes” votes. Some of the bills we are currently advocating for will significantly improve patient access to needed treatments:

· S 652/HR 2630, the Safe Step Act, would ensure that employer plans/PBMs (Pharmacy Benefit Managers) offer an expedient and medically reasonable step therapy exceptions process. This will empower individuals to navigate their insurance and help them access the treatments they need in time. Read the flyer and see the 215 orgs that support the bill.

· S 1375/HR 830, the HELP Copays Act, would ensure that copay assistance is counted towards a beneficiary’s deductible and out of pocket maximum. This will help patients afford their treatments. Read more.

For more information on our national efforts check out the 2023 UOAA Federal Advocacy Priorities Handout.

We all have the choice to do nothing or take action. I hope you choose UOAA and take action with us so we roar even louder!