Ostomy Advocates in the ‘Room Where it Happens’

“One person can make a difference, and everyone should try.”
– President John F. Kennedy

By UOAA Advocacy Manager Jeanine Gleba
UOAA Executive Director Christine Ryan

During UOAA’s annual call to action in 2023 for state proclamations recognizing Ostomy Awareness Day, one of our advocates, Anne Iahdini, a fellow ostomate living in Massachusetts, contacted her State Representative, Rob Consalvo, and so the snowball effect began. Representative Consalvo’s legislative aide Emily Carraro responded with a resounding ‘yes’, resulting in a resolution being adopted by the Massachusetts House of Representatives on October 2, 2023.  But they didn’t stop there.  The Office of Representative Consalvo extended an invitation to host a special ostomy educational/awareness event at the Massachusetts state capitol in Boston. Anne reached out to UOAA for support with planning the event.  

Photo from left to right Sarah Tompson, Keyla Caba, Representative Rob Consalvo, Representative Kate Donaghue, Representative Paul Donato, Christine Ryan, Ava Hosea, Sophie Harmon; Photo courtesy of Emily Carrara in the Office of Rep. Consalvo

After many months of planning and coordinating, several extraordinary ostomy advocates (Keyla Caba, Sophie Harmon, Ava Hosea and Sherry Thomas), one passionate certified WOC nurse (Sarah Thompson), and UOAA Executive Director, Christine Ryan, brought down the house on January 31, 2024, that is the Massachusetts State House, with their informative and inspiring presentation!  The audience was filled with several Massachusetts legislators and/or their staffers from both the Senate and House of Representatives, WOC nurse supporters and other ostomates from around the state. 

The group provided light refreshments for the audience, UOAA materials and gave a  presentation that offered a brief overview of ostomy surgery and ostomy supplies along with challenges and issues that many living with an ostomy face. UOAA created a fact sheet handout for the event entitled “Access Matters” that included some of the “Bay-stater” patient testimonials. For example, Keyla shared “Having an ostomy is hard enough. Add insurance denials, costs, and access to the journey it becomes an added stressor to having a device. Not knowing if I will have enough supplies at the end of the month gives me anxiety. Not knowing if I am going to receive the correct amount of supplies every month is like opening a box of chocolates. I never know what I will get.” 

Photo from left to right ostomy advocates Sophie Harmon, Keyla Caba and Ava Hosea; Courtesy of Keyla Caba

Christine also read a letter that UOAA received from Massachusetts resident James McNiff, a disabled marine corps veteran who was diagnosed with bladder cancer at Camp Lejeune while in service of his country and now lives with a permanent urostomy.

Each young woman spoke from the heart sharing their personal story and the challenges they experience with access to their ostomy supplies and the stigma faced living with an ostomy.  For example, Ava explained that she has to put medications through a feeding tube into her distal stoma two times per day. This requires two ostomy pouches per day, which is sixty per month. Her insurer MassHealth WellSense has an approved quantity of 20 per month. Her prescription gets denied every year and has to be appealed several times. She has been shorted ostomy pouches so often that she has had to make them using Ziploc Freezer Bags and medical tape on numerous occasions. The average resolution time for insurance denials has been 5-6 months before they can stop making telephone calls and her ongoing orders are correct. “This disrupts critical continuous care and causes undue emotional stress to people already going through physical duress.”

Sophie focused on the importance of emotional support and shared that she has experienced both prejudice and ignorance towards her ostomy and this takes a large toll on mental health. “Emotional support can be just as important as physical support in ostomy aftercare. The stigma around ostomies must end with increasing education and awareness.” 

The little snowball is gaining momentum and ostomates in Massachusetts are making a difference! 

The speakers stressed that positive patient outcomes depend on having the right ostomy supplies at all times. They should be given the same degree of urgency as medications. Their passion, expressing their desire for change, not only for themselves, but fellow ostomates who experience similar issues, moved many in the room.

They asked their elected officials to introduce and support legislation in the Commonwealth that would make the insurance approval process for ostomy supplies and medications easier for ostomates. 

They received an overwhelming response from the audience and Representative Consalvo is going to work with the advocates this year to introduce legislation in 2025 to make improvements in regards to access to ostomy care and access to supplies. If this legislation passes, it could become a model for other states.

The little snowball is gaining momentum and ostomates in Massachusetts are making a difference! 

UOAA would like to personally thank everyone from the ostomy community who attended this event, especially our patient advocates who were willing to share their very personal journey and struggles, and Anne Iahdini, who took the first step to make this happen.

UOAA has received enthusiastic feedback from this successful advocacy event. If anyone is interested in spearheading a similar event in their state, please contact UOAA Advocacy Manager, Jeanine Gleba, at advocacy@ostomy.org. Guidelines will be made available later in the year.