Tag Archive for: ostomy advocacy

UOAA Advocates Bring Patient Voices to Capitol Hill

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By Jeanine Gleba, UOAA Advocacy Manager

Despite the government shutdown, United Ostomy Associations of America (UOAA) successfully hosted Patient Voices on the Hill Day on October 8th. UOAA advocates from across the country—strategically chosen from districts and states with influential lawmakers on health policy—traveled to Washington, D.C. to protect access to ostomy and urological supplies.

💬 Patients Speak Out

During a full day of meetings, advocates shared powerful clinical insights and personal stories to educate Members of Congress and Administration officials about the dangers of including ostomy and urological supplies in the Competitive Bidding Program (CBP). They highlighted how treating these medical devices as “one-size-fits-all” equipment could severely limit access to essential, individualized prosthetic supplies—putting patient safety, health, and quality of life at risk.

The patient stories shared were deeply moving. Advocates showed photos, supplies, and firsthand experiences illustrating the physical and emotional impact of pouch leaks, skin damage, and the challenges of living with an ostomy. Their voices made the issue personal, underscoring the human cost of misguided policy changes.

In every meeting, UOAA advocates called for Congressional oversight to ensure that ostomy and urological prosthetic devices remain excluded from the CBP proposal.

Patient Voices on the Hill Day Advocates included, back row from left: Dr. Diego Schaps, Mark Jassey, Rick Riessle, Rolf Benirshke and Mike McGinty Middle row from left: Lisa Donovan, Jeanine Gleba, Jenny Levinson, Laura Kaiser (APRN, CWOCN) Briana Hovermale, Jessica Pelle, Colleen Seeber-Combs, Theresa Johnson, Megan Miller (CWOCN), Christine Ryan, Rebecca Mcelyea (CWOCN) and Kimberly Sanders. Front row from left: Reilly and Tracy Otto, Steve Kearley. Missing from photo: Sananda A. Jones. Photo by Ed Pfueller, UOAA Communications and Outreach Manager.

The fly-in brought together 16 dedicated patient advocates and caregivers, including ostomy nurses and leaders from UOAA, Convatec, and a representative from the WOCN Society. Together, they conducted 30 meetings across Capitol Hill—8 in the Senate and 22 in the House—engaging 16 Republican and 14 Democratic offices. Lawmakers on both sides of the aisle expressed strong interest in safeguarding patient access to medically necessary products.

As a result, the event generated significant bipartisan support and strengthened relationships with Congressional champions committed to protecting access to ostomy and urological supplies as essential prosthetic medical devices.

We extend our deepest gratitude to all the advocates who took time from their lives to speak out on behalf of our community, and to Convatec for joining forces with us to make this effort possible.

In addition, thank you to the 1,000 advocates nationwide who responded to our most recent Call to Action!  Your stories and outreach encouraged Representatives to sign a Congressional Letter led by Reps. Neal Dunn (R-FL) and Greg Murphy (R-NC)—both urologists—urging CMS and OMB to withdraw the proposal. The final letter, sent on October 9, 2025, was signed by 26 Members of Congress, a strong showing of bipartisan support. UOAA’s advocacy efforts were recognized in a recent HME News Article.

At this time, there are no open action alerts for this campaign. However, if you have received a response from your elected official, please contact us at advocacy@ostomy.org so we can continue the dialogue with their offices. 

We will continue to provide updates as they become available. For background information, updates, and ways to get involved—including social media tools—please visit our Competitive Bidding advocacy page.

We expect the final ruling on this issue in November. Regardless of the outcome, please know that UOAA remains steadfast in its commitment to work with policymakers and ensure continued access to the supplies that support dignity, health, and quality of life for all people living with an ostomy.

Thank you for standing with us and lending your voice to this vital effort.

NEW UPDATE! List of  specific Lawmakers wen need to contact ASAP – take action here.

Join UOAA’s Advocacy Network to get the latest alerts to take advocacy action on issues important to our ostomy and continent diversion community!

UOAA Advocates Making an Impact on the Hill

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By Jeanine Gleba, UOAA Advocacy Manager

The Digestive Disease National Coalition (DDNC) is an advocacy organization composed of the major national voluntary and professional societies concerned with digestive diseases. DDNC’s mission is to work cooperatively to improve access to and the quality of digestive disease health care to promote the best possible medical outcome and quality of life for current and future patients.  UOAA has been a member of this coalition for many years.

Each year the DDNC hosts a Spring Public Policy Forum. This year they celebrated their 30th anniversary! This special event was a two-day advocacy conference held  March 1-2, 2020 that brought together patient advocates, health care providers, and organizational members of coalition. Passionate and dedicated advocates traveled from 28 states all across the country and Washington DC. Over two days, attendees heard from multiple panels of leaders in the digestive disease community, attended a reception celebrating the coalition as well as its champions, and advocated for medical research and patient care on Capitol Hill. 

UOAA had five ostomates representing UOAA and the ostomy community. We are grateful that Lacee Harper, Rena Münster,  Michael Quear, Mollie Tinnin and Lynn Wolfson joined UOAA President, Susan Burns, and myself in Washington, DC. They spoke up about improving treatment for digestive diseases, shared their ostomy story and advocated for legislation such as the Removing Barriers to Colorectal Cancer Screening Act and the Safe Step Act. While mingling with attendees, we also had the pleasure of meeting a new ostomate advocate, Nancy Pedersen, and a mother of a young daughter with an ostomy, Jessi Richards, who was attending as a representative for the Megacystis Microcolon Intestinal Hypoperistalisis Syndrome (MMIHS) Foundation. We hope both of them will advocate with UOAA in the future.

UOAA Advocates at DDNCThe greatest take-away message from honorees and guest panelists was the impact we make on the Hill.  For example, it is truly because of patient advocates sharing their stories that we have seen increases in medical research funding. To give you a glimpse into my day on the Hill, I was on Team 6 with a surgeon from Nebraska and an IBD patient advocate from Connecticut.  I found we were met with very positive responses by legislator staffers in the Senate and House. In many cases, the offices we visited were already co-sponsors of the different legislation pieces and this occurred on both sides of the aisle.  They certainly all “got” the Safe Step Act and need for proper gluten labeling. When I followed up with my Congressional office (NJ Rep. Josh Gottheimer), they informed me that they have now signed on to the Medical Nutrition Equity Act (H.R.2501). Our visit and advocacy message resulted in a positive outcome!

New this year we advocated about non-medical switching as it relates to ostomy supplies.  It can take patients and their medical team quite a while to find the right “fit” ostomy pouching application system. However, we are finding for example that insurers in some cases are restricting consumers to specific brands, some suppliers switch outpatient preferred choice of products for non-medical reasons such as cost and patients are restricted to using a different brand such as a generic, which do not always have the same quality or reliability. Ostomy supplies are prosthetic devices and a person’s complete pouching system is customized for their unique stoma fit and individual needs. It is not okay for others to just switch that out!  We urged Congress to limit out-of-pocket costs and curb current and future payer tactics proactively.

UOAA will continue these advocacy efforts throughout the year. If you have experienced your supplies being switched out for non-medical reasons and it resulted in restricted access to your preferred products or an increase in your out-of-pocket costs or it negatively impacted your health or quality of life, submit your story HERE.