Lichen Sclerosus Advocacy in D.C.!

Hey, incredible LS Warriors! Get ready to cheer because something HUGE just happened for our community! This past week, I had the honor of representing YOU and the Lichen Sclerosus Support Network (LSSN) on a powerful advocacy trip to Washington D.C. – affectionately known as “Hill Day”! It was an intense, emotional, and absolutely rewarding experience, and I can’t wait to share all the exciting details!

For too long, living with lichen sclerosus has meant facing a confusing and often isolating journey. We know the struggle of delayed diagnoses, limited treatment options, and feeling like your concerns aren’t fully understood. That’s why LSSN exists – to turn that isolation into empowerment and fight for a brighter future for every single one of us!

This trip wasn’t just about LSSN; it was a massive collective effort! Our incredible team for this inaugural lichen sclerosus advocacy trip included Pam Cobb, Ellen Peller, Brianna Carter, and myself (Kathy Ruiz-Carter). We joined forces with The Coalition for Skin Diseases, an amazing group that brought together advocates from across the nation for their annual Hill Day event, held this past May 18 through May 20. This three-day, in-person experience is truly packed with advocacy training, expert insights, and an incredible opportunity to make your voice heard as part of the powerful skin disease community.

Just to give you an idea of the scale, last year, The Coalition for Skin Diseases hosted a Hill Day with 58 passionate patient advocates from 21 states who came together to amplify their voices. They conducted meetings with 57 legislative offices and even hosted a congressional briefing dedicated to “Understanding and Addressing the Burden of Skin Diseases.” This year, we were part of an even bigger movement with 89 passionate advocates who held over 100 meetings on Capitol Hill! Together, we represented 33 different skin diseases, impacting a staggering 84 million Americans! Just imagine the force of all those voices united!

We went to D.C. with clear, powerful messages, advocating for vital changes that will directly improve the lives of LS warriors and millions of others affected by skin diseases. Here’s exactly what we pushed for:

Did you know that global skin diseases have risen over 7% since 1990? And in the U.S. alone, more than 84 million people live with a skin disease – that’s over a quarter of all Americans! Despite these huge numbers, the National Institutes of Health (NIH), the biggest investor in skin disease studies, has barely seen an increase in funding over the past decade. In fact, in Fiscal Year 2024, the NIH and the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) actually got less money than the year before. This is just not enough!

We passionately requested increased, robust funding for both the NIH and NIAMS in FY2026. We also championed funding for the Chronic Diseases Education and Awareness Program at the Centers for Disease Control and Prevention (CDC). This program is super important for lichen sclerosus advocacy because it helps provide flexible funding for chronic disease communities, like ours, that often get overlooked. More funding means more breakthroughs, better understanding of LS, and ultimately, better treatments and even a cure for LS and other skin diseases!

We strongly supported legislation like the SAVE Act (Safe Access to Value-Driven and Evidence-Based Healthcare), which was previously known as the Safe Step Act. This bill fights against “step therapy” protocols, often called “fail first.” This is when your insurance company makes you try their preferred medications and prove they don’t work before they’ll cover the treatment your doctor initially chose for you. When this happens at the wrong time, it can seriously delay your care, lead to severe health problems, and even cost more in the long run. We pushed for legislation that ensures health plans offer an expedient and medically reasonable step therapy exceptions process!

Counting All Co-Pay Assistance with the HELP Copays Act!

We also advocated for legislation like the HELP Copays Act. This bill would require private health plans to count the value of any co-pay assistance you receive toward your deductible or out-of-pocket maximum (your overall cost-sharing requirements). Right now, a sneaky loophole allows many plans to call certain covered drugs “non-essential,” meaning your co-pay assistance doesn’t count toward your costs. This legislation would bring much-needed relief, making sure all payments – whether from your pocket or with help from co-pay assistance – count towards your out-of-pocket costs!

This one is all about shining a light on how your prescription drugs are priced! We supported legislation like the Pharmacy Benefit Manager Transparency Act. This bill would ban deceptive unfair pricing schemes by PBMs, prohibit arbitrary clawbacks of payments made to pharmacies, and require PBMs to report to the Federal Trade Commission (FTC) how much money they make through hidden fees and spread pricing.

PBM reform is vital to make often life-saving prescription drugs more accessible and affordable for LS warriors and everyone with skin diseases!

I met with four representatives – two senators and two House of Representatives members. Each meeting was unique! My first two meetings were incredibly receptive; their aides listened intently, asked thoughtful questions, and truly seemed to want to learn more about LS and how they could help. It was so encouraging to feel that immediate connection and willingness to understand!

The last two meetings were a bit tougher. In one instance, the representative didn’t even meet us in their office, but that didn’t stop us from sharing our message loud and clear with their staff. Even when it felt like we weren’t getting through, we knew we were planting important seeds and leaving vital information behind. Every conversation matters.

Sharing my personal story was intense. It always is when you open up about something so private and often painful. There were moments when I felt emotional, but I knew it was absolutely vital. I wanted them to feel the impact of lichen sclerosus, to understand not just the physical struggles but the emotional toll it takes. It’s one thing to read a fact sheet, and another to hear the raw, honest truth from someone who lives it every day. That’s how we make real change – by making it personal and heartfelt.

This experience was a powerful reminder of how much work there is to do, but also how much we can achieve when we come together. I’m already planning for next year, and my hope is to have an even larger group of LS warriors joining me on Capitol Hill! Imagine the even greater impact we could make then!

This “Hill Day” trip, truly a collaboration sponsored by The Coalition for Skin Diseases, was a true celebration of advocacy, resilience, and community. We’re on a mission to empower every person with LS, and your support helps us continue these vital efforts.

With so much hope and gratitude,

Kathy Ruiz-Carter