Two years ago, I was invited to accompany Jeanine Gleba, the Advocacy Manager for the United Ostomy Associations of America (UOAA) to Capitol Hill to help legislators understand the importance of funding of Digestive Disease issues. It was an amazing experience, and one I looked forward to repeating last year. But the timing made me anxious, we were hearing too much about this strange and possibly highly contagious virus, and having a compromised immune system, I was fearful of being in large groups. How prescient, because shortly after that, we learned that the Corona Virus was not only highly contagious but extremely deadly. Now, a year later, I am so honored and pleased to be able to represent the Ostomy community in presentations to the legislative aides of senators and representatives, this time, however, via Zoom.
Many of you will understand the nature of the more well-known digestive diseases, such as Crohn’s and Ulcerative Colitis. Thanks to the medications we see on television virtually changing lives for the better, we accept that there is help for most chronic issues. However, this is not the case, and there are so many diseases that require very sophisticated treatment. Even for those of us with the need for ostomy supplies, or catheters, infusion equipment or all that is necessary to protect a port or other line, we are at the mercy of insurance companies to support us. Unfortunately, that is not always the case. Many spend their lives fighting insurance companies to simply get covered the most basic elements of their need for survival, only to have to do it all over again when a less expensive option is substituted as a cost-saver for the insurance company. It broke my heart to hear of one such situation, and it makes me angry that this is becoming the rule, rather than the exception. Gaining all of this background information is so important because now we feel empowered when we “go to the Hill!”
When our team meets with our legislative aides, I will demonstrate what an ostomy looks like on the body, since thanks to a wonderful gift from a vendor, I can strap this on my waist over my clothes. I will not only be able to explain the creation of Lily, my stoma, but will be able to show how important my supplies are, and how they enable me to lead a fulfilling life. Other members of the team will educate our legislators to pass legislation, such as the Safe Step Act, that requires a patient to try and fail with a less expensive prescription in place of the one prescribed by the doctor. This not only delays treatment and recovery but can cause irreparable damage. Congress can require health plans to implement an appeal process that takes place within 24-72 hours. Our team has compelling stories to share, and I know that our impact will be felt by those capable of making a difference for those suffering and struggling!
It always amazes me that while we are living our lives, there are those who are doing amazing things to help and support us. Working with the Digestive Diseases National Coalition on their spring forum has educated me with the knowledge that cancer, kidney and bladder disease, Gulf War illnesses, food allergies, hepatitis B, pancreatitis, and a myriad of others are being researched. If change is to come, that is how it will happen. I strongly believe that meeting us, even virtually, will have a great impact on those in a position to guide our legislators. Hearing firsthand the challenges of their constituents is invaluable, to them, and to us.
Outstanding!