Tag Archive for: Advocates

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.

By Jeanine Gleba, UOAA Advocacy Manager

Too many people living with an ostomy have the worry that due to a need for frequent pouch changes or a high output stoma they will run out of their monthly Medicaid allowable ostomy supplies.  For the past year, UOAA has been supporting efforts, led by Coloplast, to expand Medicaid coverage of extended wear products in states with remaining access problems across the country. 

UOAA’s advocacy work has included:

  • Raising awareness on this important issue
  • Recruiting Affiliated Support Group leaders that are also WOC nurses and other local clinicians to provide clinical support and insight
  • Sending letters to state divisions of Medicaid services urging them to review the ostomy supply policy regarding coverage of ostomy supplies for HCPCS codes and quantities, specifically for extended wear products. 

As the voice and leading organization advocating for people living with an ostomy, we know first-hand how important access to ostomy supplies are for our patient population. We share the patient perspective with testimonials from advocates as well as explaining patients’ unique needs, such as those who are unable to achieve normal wear time with a standard barrier. Improved access to extended wear barriers will assist those who do not have an optimal fit or have a high-output stoma and go through more standard wear barriers and pouch changes. For these individuals extended wear products would be the prescribed solution. 

As a result of the collaboration between Coloplast, UOAA, State Home Medical Equipment (HME)/Durable Medical Equipment (DME) Associations, local clinicians and other advocates, we have expanded patient access to extended wear products in seven states as noted in the above map. This is excellent news for Medicaid beneficiaries living with an ostomy in these states! (Note: States that are grey/light blue on the map were not seen to have any state Medicaid extended wear access challenges.)

More advocacy efforts are underway in Alabama, Arkansas, Georgia, Louisiana, Maryland, Missouri, Ohio, and Wisconsin to remove the current barrier to access in those states. These states have Medicaid coverage that is much less than the current Medicare standards.

This event has passed but you can view it below. “This is My Life Now: A Patient Guide to Advocacy” By ConvaTec featuring UOAA Advocates.

Join ConvaTec for a live discussion with ostomates, nurses and other healthcare professionals at their two-session, one-day virtual summit on Friday, October 1, 2021.

“Ostomates’ Rights Are Human Rights – anytime and anywhere” is this year’s World Ostomy Day theme, which is why ConvaTec is bringing together ostomates, nurses and caregivers to lead open discussions that will be patient rights-focused fostering awareness, education, and advocacy.  Together we will have conversations that matter!

The Patient Summit will be broken into two sessions:

Session 1, 1pm EST: This Is My Life Now: A Patient’s Guide to Advocacy:

Joanna Burgess, BSN, RN, CWOCN. Is a WOC Nurse at Convatec and is Co-Chair of UOAA’s Advocacy Committee

Jeanine Gleba, MEd., UOAA Advocacy Manager

Ellyn Mantell is a UOAA Advocate, Author and Ostomy Support Group Leader.

Did you know that by knowing your patient rights and feeling empowered and exercising those rights – you can take those situations where you felt down and make it positive. Think, “This is MY life now. I have the right to be me.”

Learn about your local and international ostomy support resources, understand your patient rights, and feel empowered to exercise those rights in this session.

Scheduled panelists:

• Ellyn Mantell (United States), UOAA Advocate, Ostomy Support Group Leader

• Jeanine Gleba (United States), United Ostomy Associations of America, Advocacy Manager

• Joanna Burgess (United States), WOCN, ConvaTec me+™ Nurse, UOAA Advocacy Committee Co-Chair

 

Session 2, 3pm EST: Creating a Healthy Bond: Healthcare Support for Your Patients:

Allison Rosen is UOAA’s World Ostomy Day Champion, a colorectal cancer advocate and Ostomy Support Team Member at MD Anderson.

Healthy bonds in life are all around us. But there may be times it feels difficult to bond. Do you know, or do your patients know, about the resources available for support? Whether that is support with a nutritionist so they can learn about fiber intake, or with an exercise therapist to get guidance on hernia prevention. It could even be the support a therapist can provide navigating new emotions in your personal relationships. There are healthy bonds that can be built between an ostomate and their healthcare professionals.

Create a strong bond with your patients and healthcare providers. Get to know the different types of pre and post-operative support available.

Scheduled panelists:

• Lorena Eltz (Brazil), Patient Advocate

• Lorraine Grover (United Kingdom), Psychosexual Nurse Specialist

• Allison Rosen (United States), United Ostomy Associations of America- World Ostomy Day Champion

 

Editor’s note: This blog is from ConvaTec, Platinum Sponsor of the 2021 Run for Resilience Ostomy 5k. This event raises ostomy awareness and helps fund the services and programs of UOAA, a 501(c)(3) nonprofit organization.

 

A Decade of Shining a Positive Light on Lifesaving Ostomy Surgery

By Jeanine Gleba, UOAA Advocacy Manager

“Ostomates Unite and Help Place The Ostomy In A Positive Light! Celebrate UOAA’s Ostomy Awareness Day!”  These were the words that were spread when UOAA announced the first National Ostomy Awareness Day on July 25, 2010. A decade later, UOAA continues to sponsor and celebrate this day annually in the United States by raising awareness about this life-saving surgery and increasing national visibility of those living with ostomies. Starting in 2014, and all subsequent years, UOAA has been celebrating Ostomy Awareness Day on the first Saturday of October, which coincides with World Ostomy Day every three years. This year National Ostomy Awareness Day will be held on Saturday, October 3, 2020. 

The idea for an awareness day was originally suggested by Ally Bain, who worked with UOAA as a summer intern in 2010. (Flash forward, this is the same Ally instrumental for the Restroom Access Act (aka Ally’s Law).  The awareness day began as an experiment in social media to see what kind of grassroots support they could get for ostomy recognition. UOAA sent out a request on social media asking all followers to show their allegiance to the cause by changing their online status to the slogan above and make their profile picture UOAAs logo.  The immediate response was so strong that they were also contacted by friends at Talkin’ Bout Guts, to host a 24-hour live podcast in honor of ostomy awareness. Thousands participated that year.

In recent years, UOAA has also named an Ostomy Awareness Day Champion. This year’s champion is Robin Brown, pageant winner Mrs. Washington, who uses her stage platform to raise awareness for ostomy surgery “all in the hopes that it can be a light for someone stumbling in the darkness”.  Her ostomy story and journey from farm girl to the title of Mrs. Washington World America is inspiring. Watch her special video message for Ostomy Awareness Day!

Over the years, celebrations have been centered around several different themes including Bouncing Back into Life, Navigate the Journey Together, Speaking Out Changes Lives and, most recently, Ostomies Are Life-Savers.

To commemorate the 10th anniversary, here are 10 ways you can join the movement to raise ostomy awareness this year:

  1. Help shine a positive light on ostomy surgery and go “live” on your own at 7:00PM EDT on October 3rd with people all across the United States. Hit the “live” button on your personal social media accounts (Facebook, Instagram or TikTok) to shine a light on yourself and tell everyone how your ostomy saved your life or that of a loved one. If you are a medical professional, share how your work helps save lives. 
  2. Participate in our 7th annual Run for Resilience Ostomy 5k. This year our local Ostomy 5k events will be held virtually along with our annual worldwide virtual Run/Walk, so you can walk or run in your favorite place or at home. Visit www.ostomy5k.org to register or donate for one of these events. You can also join UOAA’s “United Advocates Smashing Stigma” team too!
  3. Create a fundraising team through one of our Ostomy 5k events and challenge your family, friends, Affiliated Support Group members, colleagues and coworkers to raise ostomy awareness and funds for a good cause! Have your teammates share the team campaign and see who can get the most donations. Better yet, ask your employer to match any donations raised! 
  4. Make a donation to the “Ostomy Awareness Fund” as a tribute to the 10th anniversary. Donate a minimum of $30 and receive a special bandana with the “Ostomies Are Life-Savers” graphic image.   These bandanas are also a great pet accessory.  Share a photo with UOAA of your pet raising ostomy awareness!
  5. Participate in some of the events we have planned with partners such as the Facebook Live Event that will be co-hosted with Crohn’s and Colitis Foundation on October 3rd. 
  6. Raise awareness and spread the message that ostomies are life-savers using our infographic. We encourage you to share, post or print it wherever possible. 
  7. Our Operation Ostomy – A Life Saver campaign continues to spread the message that we are saving lives one ostomy at a time. Please use our 10th Anniversary Ostomy Awareness Day logo for your profile picture on your social media accounts. Use the hashtags:  #OstomiesAreLifesavers #OstomyDay2020 and tag UOAA on Facebook @uoaainc  Instagram @uoaa_ or Twitter @uoaa. 
  8. Get your Federal, State or Local elected officials to pass a proclamation declaring October 3, 2020 as the 10th anniversary of this special day. Use our sample proclamation or take action here.
  9. Use our sample letter to the editor to share with your local media why ostomies are life-savers.
  10. Aside from Ostomy Awareness Day, October is full of fun fall activities. Carve a pumpkin (or paint) in an ostomy theme. “Shine a light” in your carved pumpkin and raise ostomy awareness in your neighborhood.

For more information and the latest ways to get involved including activities from some of our sponsors visit https://www.ostomy.org/ostomy-awareness-day/.

With your help we will carry on breaking the silence and shining a positive light on what has saved so many lives.

Summer is quickly approaching and before you know it we will be in Philadelphia at UOAA’s 7th National Conference. With so many new and exciting things planned it is sure to be the best ever! I know whenever I attend a conference I plan well in advance and create my own personal schedule to ensure I do and see all that is of particular interest to me.  This includes conference sessions, social activities and taking some time for local sightseeing in a place I may never have been before. I also always go out of my way to try a new food or beverage native to a particular city or state and in this case it will be an iconic “Philly cheesesteak”.   

As UOAA’s Advocacy Manager I’m very excited that this conference is being held in Philadelphia, a city so very rich in history and quite frankly home to our country’s first advocates.  Here is my twist on ways you can take advantage of this city and our conference, if you have a soft spot for things “advocacy”-related:

  1. Be sure to sign UOAA’s Ostomy and Continent Diversion Patient Bill of Rights during Exhibit Hall hours at the UOAA booth. These signatures will be collected for potential use in advocacy efforts to improve quality in ostomy health care. You also can see one of the 12 surviving original copies of the US Bill of Rights at the National Constitution Center while in Philadelphia.
  2. Pay tribute to our country’s first advocates and visit the Independence National Historic Park to walk in Independence Hall where our founding fathers signed the Declaration of Independence on July 4, 1776.
  3. Celebrate your independence and and see the most famous cracked bell in American history – the Liberty Bell.  You can see it for free at the landmark Liberty Bell Center.
  4. Calling all superheroes!  On Wednesday, August 7th at 2:45 pm attend the UOAA Advocacy Session United Ostomy Advocates to the Rescue”! Come hear first-hand from some of UOAA’s advocates on how they use their “superpowers”, and also learn more about current advocacy efforts underway at UOAA. Leave our national conference empowered to make a positive difference!
  5. Many times in advocacy we face an uphill battle and feel like an underdog. For decades now Philly has been known for the ultimate underdog tale in the Rocky movie series. Show your resilience and run/climb the infamous Rocky stairs at the Philadelphia Museum of Art.  There are 72 stone steps and at the top you can chant “Yo, Philadelphia! I did it!”. Or you can take a picture at the statue of this legendary “Italian Stallion” located near the bottom of the steps.
  6. Philadelphia is known as the “City of Brotherly Love”.  Show your love for the ostomy community and go to Love Park to get a picture at the “LOVE” statue designed by Robert Indiana.

    Love park

  7. Be sure to stop by UOAA’s booth in the Exhibit Hall to pick up some of our self-advocacy tools and educational resources for use when you get back home in your own advocacy efforts.
  8. When it comes to advocacy and activists I can’t think of a more wiser and inspiring person than the fascinating and influential Benjamin Franklin! Not only was he one of the founding fathers of the United States, but he was an author, politician, postmaster, printer, inventor, scientist, diplomat and statesman. Of interest to the ostomy community is that he was the inventor of the flexible urinary catheter and founded the first public hospital!  If you have time, visit the Franklin Science Museum or just drive by the Benjamin Franklin Bridge. As an advocate I am inspired by so many of his famous quotes. I often say the key to advocacy is not only raising awareness and educating others, but also patience and perseverance.  Here are a few of my favorite quotes by Ben Franklin:

“Tell me and I forget, teach me and I may remember, involve me and I learn.”

“He that can have patience can have what he will.”

“Justice will not be served until those who are unaffected are as outraged as those who are.”

“Energy and persistence conquer all things.”

    9) On Saturday, August 10th, at 2:15PM, please pop-in to contribute to UOAA’s first-ever research study by completing a short survey.  This data will help us make improvements to the underserved ostomy population. Upon doing so, you will also be entered into a drawing to win a prize!

   10) Join us during the conference Closing Ceremony at 3:30PM on Saturday, August 10th where we will be recognizing for the first-time the top advocate in the ostomy community! The Mighty Advocate Award, sponsored by UOAA, is a new biennial award intended to honor one individual for his/her significant accomplishments and contributions to support UOAA advocacy efforts and/or has brought greater ostomy awareness in the United States. Your presence will help make this a special moment in our advocacy history!

 

In conclusion, I’m excited to put a name to the face of the many advocates who have emailed me or have worked with me on advocacy efforts over the past couple of years, and meeting more of the people we strive to make an impact every day in our work at UOAA. See you in Philly!

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.