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Ostomy Advocates Taking Action in Washington, DC for Digestive Diseases

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By Jeanine Gleba UOAA Advocacy Manager

Each year the Digestive Disease National Coalition (DDNC) hosts a Spring Public Policy Forum.  UOAA has been a member of this coalition for many years starting with our co-founder the late Linda Auckett.  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.  Many in the ostomy community brought them to this surgery because of digestive medical conditions such as colon cancer and inflammatory bowel disease.

As the current Chairperson of the DDNC, I was especially proud of this year’s 34th Spring Public Policy Forum that was held March 3-4.  The coalition’s consulting team at Health Medicine Council worked tirelessly to ensure its success.  This year we were back to an all-in-person event with about 85 attendees representing 17 states. 

On Sunday afternoon patient advocates and coalition members represented organizations such as the Crohn’s and Colitis Foundation, Celiac Disease Foundation, The Oley Foundation, and the National Pancreas Foundation and gastroenterologists from numerous state societies. 

Team MA, NJ, NY advocating on Capitol Hill from left, Daniel Morgan (Mission Cure), Corey Greenbalt (Global Healthy Living Foundation), Emilie Schlitt (WOCN Society), Keyla Caba (UOAA), Sean McCabe (Legislative Director for Congressman Anthony D’Esposito), Jeanine Gleba (UOAA), Lisa Metzger (Oley Foundation), Dr. Maurice Cerulli (American Gastroenterological Association); in the back row Jane Holt (National Pancreas Foundation)

Featured presentations included the FDA, National Institutes of Health, All Copays Count Coalition, National Organization for Rare Diseases and the American Association for Cancer Research.  A special highlight of the afternoon was hearing the patient perspective from UOAA’s patient advocate Keyla Caba and the things she advocates for. Later that evening attendees had a networking opportunity at a cocktail reception. 

“I know my doctors have been very excited to know that patient voices and experiences in the digestive community are being shared with our legislators to impact & hopefully pass relevant Acts.” – Jennifer Locane (FL)

Monday morning we walked over to Capitol Hill and advocated for the DDNC public policy priorities in our respective state Congressional offices.  The morning started with breakfast in the Rayburn Building where myself and DDNC President Dr. Carroll Koscheski presented several awards including the Lifetime Achievement Award to Dale Dirks.  He has been working with the DDNC since its inception with founder Susan Rosenthal in the early 1980s.  

From left, Dr. Carroll Koscheski (President DDNC), Dale Dirks, Jeanine Gleba (Chairwoman DDNC

In the visits with staffers we continued to push for medical research funding and passage of the Safe Step Act (S. 652/H.R. 2630) and the HELP Copays Act (S. 1375/H.R. 830) along with the Medical Nutrition Therapy Act (S. 3297/H.R. 6407).  They are widely co-sponsored in a bipartisan way and stand a good chance of passage this session in Congress and we shared the impact on the ostomy community. The ostomy advocates also had an opportunity to discuss the negative impact of non-medical switching of ostomy supplies, a cost-shifting tactic. We also advocated for Medicare coverage of fistula supplies.  

This year there were quite a few ostomy advocates in attendance including Past President Susan Burns and UOAA Board of Director Lynn Wolfson, and Ashley Mann also representing FOW-USA. The WOCN Society also had a certified ostomy nurse, Emilie Schlitt (CWOCN), in attendance.  I was lucky that she was on my team.  I couldn’t help but notice that in all of the meetings I attended not a single staffer knew what an ostomy was, so it was a great teachable moment for us!

One of the new ostomy advocates, Jennifer Locane (FL), made the following comment to me about her experience joining us this year:

“I know my doctors have been very excited to know that patient voices and experiences in the digestive community are being shared with our legislators to impact & hopefully pass relevant Acts. It’s a blessing to do something good with all this pain, suffering, and experience & to make friends in the process!”

It’s because of sharing our collective patient stories annually that the DDNC continues to sustain progress on ensuring funding for research, public health, and treatment development, and on their coverage and access priorities. Together we do make a difference.

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.

UOAA Advocates in Action

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Ostomates Provide Insight to Lawmakers on Behalf of UOAA

By Ellyn Mantell and Michael Quear

Left, Ellyn Mantell with UOAA Advocacy Manager Jeanine Gleba, right, outside New Jersey Senator Cory Booker’s office.

UOAA Representative – Ellyn Mantell

There is so much frustration and dissatisfaction around the government right now, that it is easy to forget all of the wonderful things that continue to be done behind the scenes, and I want to share with you my experience in that regard. On Sunday, March 3, 2019, my wonderful support guy, husband, Bruce, and I traveled to Washington, DC to attend the annual Digestive Disease National Coalition meeting. I was asked to be a Patient Advocate accompanying Jeanine Gleba, Advocacy Manager for United Ostomy Associations of America. She and I have a special bond, since she lives in New Jersey and has attended support groups’ meetings with me, and we both have the same goal, which is increasing awareness and getting the most for ostomates.

After meeting key personnel and greeting other attendees on Sunday night, I felt empowered to be part of Team 5 the next day, when we would go to “the Hill!” Monday morning, following a warming breakfast (which we needed since it was windy and oh, so cold walking up toward the Capitol) and a basic logistics session, we headed to the Hart Building, not actually on “the Hill” but very exciting, nonetheless. I saw the offices of Senators about whom I had read or seen on television…a rare opportunity to be in the “Place Where It Happens”!

Our team was awesome and so inspiring! In addition to Jeanine and my presentation (visual aids are great, and my emergency kit pouch was a surefire way for the Legislative Aides to get the point: the necessity for funding for supplies, etc. as well as not being denied benefits for pre-existing conditions) we had two other Patient Advocates. Carolyn was invited by Megan Glynn, Manager of National Programs for the American Liver Foundation, and she is alive because of a living donor liver transplant. This is quite amazing, since the liver is composed of two lobes. One lobe can be transplanted and both donor and donor recipient’s livers will regenerate. It is truly amazing! Carolyn was making a request her life-saving  medications, which cost thousands monthly, may bankrupt a family trying to keep alive the patient they love…a terrible choice to have to make. Generics and off label usage may make a huge difference, but funding is always the issue.

Cheryl Velba then spoke with the Legislative Aides about her Short Bowel Syndrome, she is a Rare Disease Advocate. Surviving the removal of most of her colon and small intestine, she is one of the few to survive such a severe twisting of her bowel. This life-threatening occurrence, and the damage done to her body includes not only digestive issues but ocular ones, as well. She is asking for certain medications, again, costing thousands a month, be switched for generics or off-label usage. We all urged the aides to impress upon the Senators for whom they worked to limit out-of-pocket costs as well as curb current and future payer tactics to shift costs onto the patient.

The Digestive Disease National Coalition stands for Research of Digestive Diseases; Patient Access to Affordable, Quality Health Care; and Prevention and Awareness of Digestive Diseases. Digestive Diseases are chronic and, in many cases, debilitating and disabling. I was deeply honored to be able to bring awareness to the young aides who may not have known anything about our issues before yesterday, but when we were done, had to have learned another slice of life, the struggles of many…and hopefully, they will impress that upon our NJ legislators, Senator Menendez and Senator Booker.

 

UOAA Representative – Michael Quear

I recently attended the Digestive Disease National Coalition Annual Spring Public Policy Forum as a representative for UOAA. Actually, I participated in a group that was meeting with Congressional staff. My group was made up of Pennsylvania residents; so we met with staff of the PA Senate delegations and selected House Members staff. In my group I was the only person with an ostomy, but I certainly had experience with a digestive disease!

I was diagnosed with ulcerative colitis when I was 14; 4 years later I had my surgery – a total colectomy with a permanent ileostomy when I was 18. It’s hard to believe that was 42 years ago. Plus, I certainly knew my audience. I’d had the privilege of serving as professional staff for 20 years on the Committee on Science Space and Technology in the US House of Representatives.

I know these are busy folks and that we would likely have only 20, at best 30 minutes of their time. (We actually only had 15 minutes!) So I thought what are the points I would like them to remember about life for an ostomate and what impacts what they do by allocating funding and how healthcare policy impacts people like us.

First off, show and tell. When you say the word colostomy most people think a bag filled with et cetera. An ileostomy draws a blank stare. So I took along the appliance I wear, so they could feel it, see exactly what it looks like and how it works.  Using my thumb I explained my stoma. I also explained that despite the revolutionary advances in medical diagnostic equipment, prosthetics and drugs that in ostomy products there have not been many major breakthroughs in ostomy solutions, but research funding targeted for ostomy products could change this.

I also talked about the stigma that ostomates often feel.  In general, an ostomy is something some in the public feel is only slightly worse than death.  I was 19 when I heard someone say, “I’d rather be dead than wear a bag….” And I’ve heard similar remarks occasionally thru the years. As it is national Colorectal Cancer Awareness Month, I mentioned that people who suspected they had a serious gut issue were afraid to be seen by a doctor because of this stigma. I recommended their boss use his public platform to remind people this is a procedure that saves lives, not ruins them.

Finally, the cost.  I told them the cost of my appliance and that some people need to change it daily, others every 4-5 days. Regardless, over the course of a year costs add up. Therefore, it is important that insurance and government programs cover these costs. When Congress fiddles with health care funding and/or policy they need to think about people like me with serious gut disease in general.

Was it a long day? Yes!  Was it useful – I hope so!

But I think it is one that the staff will remember.