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, 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, from Advocacy for the United Ostomy Association of America. She and I have a special bond, since she lives in New Jersey and has attended Support Groups 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 legislators, Senator Menendez and Senator Booker.
Congratulations to all these very brave people. Oh I found that absolutely adorable face !!!!
Congratulations on making it to The Hill and hearing your voices!!!! There is nothiing that can stop The Ellyn!!!!!! luvu, Carol