HONORING SHANE DIGIOVANNA

HONORING SHANE DIGIOVANNA

Congressional Record, Volume 172 Issue 48 (Tuesday, March 17, 2026) [Congressional Record Volume 172, Number 48 (Tuesday, March 17, 2026)] [House] [Page H2535] From the Congressional Record Online through the Government Publishing Office [ www.gpo.gov ] HONORING SHANE DIGIOVANNA (Mr. Landsman of Ohio was recognized to address the House for 5 minutes.) Mr. LANDSMAN. Mr. Speaker, I rise today to talk about a friend and a constituent, Shane DiGiovanna. Shane was born with EB, a rare and painful disease that makes the skin incredibly fragile. There is currently no cure. It is sometimes referred to as the worst disease you have never heard of. Shane has bandages across most of his body. This disease, because of what happens to the skin, leads to infection, illness, and the kind of cancer he is fighting now. Over the course of his life, Shane has had over 150 surgeries. Yet, he is one of the kindest, most spirited human beings I have ever met in my entire life. He is a remarkable person and, truly, one of the best people who I know. Shane is brilliant. He is funny, curious, deeply empathetic, and full of joy. He graduated from college at Rice University, even though it is not something people expected of a child with EB. Yet, if you know Shane, it is not surprising. He was already reading, I think at college level, in the second grade. Shane sends me pages of ideas and notes about history, politics, and why he believes the country can always be better. Shane has already lived longer than just about anyone with EB. He has used that time to make the world better for others, and his advocacy began when he was just a child. After one of his first surgeries, Shane brought a stuffed animal named ``Doggie'' with him to the hospital. It made such a huge difference for him, so he created Doggie's Friends, Shane's charity at Cincinnati Children's Hospital, to provide a stuffed animal to kids who are undergoing surgery. He saw something that he knew would help, and he got it done. It is just who Shane is. I met Shane as an advocate. I had just gotten elected to the United States Congress, and he had reached out to say that he wanted to talk about rare disease work, and he invited me over. I went to Shane's house and sat in his kitchen, and we went through all of the legislative priorities for the rare disease community. I was all in immediately not just because the policy moved me, but Shane was so compelling, charismatic, and convincing. Since that day nearly 4 years ago, we have texted just about every day. We talk about politics, books, history, shows, life, and what else I should be doing to help families dealing with rare diseases. Some of that work has already led to real progress. Congress reauthorized the Rare Pediatric Disease Priority Review Voucher Program. The program helps to speed up treatment development for nearly 15 million children who are living with rare diseases. Congress also passed the Accelerating Kids' Access to Care Act. The law helps children to get specialized care across State lines without delays or higher costs. Of course, there is also the funding for research. Rare disease research is a good idea for some. It is life or death for these families. That is why Congress has to step up to fund this research and make sure that the research we have funded reaches the people who will turn that research into treatment and care, to support its innovation, and to keep families healthy, which leads me to Shane's bill. We introduced Shane's bill just last week, a bill that would require the Department of Health and Human Services to study the impact of fully covering bandages for people who are living with EB. Believe it or not, these families have to pay hundreds of thousands of dollars for their bandages, even though the bandages help to ensure that these kids, young people, are less likely to go to the hospital, less likely to get an infection, and less likely to cost more. The bill ensures access to these supplies to improve care, reduce hospital visits, and ease the enormous financial burden that families already face. This is Shane's bill, a bill inspired by his life and the families he has spent years fighting for. Mr. Speaker, when you meet someone like Shane--someone who is curious, compassionate, and brilliant--you want to do more and be better. I saw Shane's impact most clearly at his celebration of life, a room filled with people from across the country who have been touched by his kindness. He is a funny, social, and gifted person, and his legacy is the life he lived, the people who he touched, and the work we will keep fighting to do, including this bill. ____________________