Speaking Up for the IPPF Community at the 2026 Coalition of Skin Diseases Hill Day
By Becky Strong
There’s something that happens when you walk the halls of Congress and say, out loud,” I’m here because of the IPPF Community”. It’s equal parts nerve-wracking and clarifying. That’s exactly where I found myself this past May, representing the IPPF community at the 2026 Coalition of Skin Diseases Hill Day in Washington, D.C. This wasn’t my first time advocating on behalf of the pemphigus and pemphigoid (P/P) community, but every Hill Day reminds me of why this work matters and why it can’t stop.
The Coalition of Skin Diseases (CSD) is a voluntary coalition of patient advocacy organizations working to improve the lives of the more than 84 million Americans living with a skin disease. The IPPF has been a long-time proud member of the CSD, and the Hill Day brings patients, caregivers, and patient advocates together to meet directly with members of Congress and their staff. This year, the event was May 18-20th at The Morrow Hotel in Washington, D.C. It was 2 days full of advocacy training, prominent speakers, a Congressional Briefing, networking with other advocates, story sharing, and face to face legislative meetings on Capitol Hill.
The first day was all about preparation. Before any of us walked into a congressional office, we went through advocacy training together. We learned about the “ask”, how to frame our personal stories, how to connect them to specific policy “asks”, and how to have productive and focused conversations with legislators and their staff in the short time slot we are given.
For those of us representing rare skin diseases, the framing is even more important. P/P are not household names. When I’m sitting across from a legislative aide, I have a few minutes to explain that these are serious, painful, life-altering and sometimes life-threatening autoimmune blistering diseases with no cures. At the same time, I need Congress to understand that the policies they make have a direct impact on whether we patients can access the care and treatments we desperately need.
The training helped us all sharpen that message. We also heard from prominent speakers that work as staffers in Congressional offices, including Molly Burns, Legislative Assistant to Debbie Dingell, my own Representative. We also had time to connect with fellow advocates from our state as well as those from across the country. I met people living and thriving with scleroderma, psoriasis, cutaneous lymphoma, hidradenitis suppurativa, and more. The CSD community and shared purpose is its own kind of fuel.
The CSD’s 2026 advocacy priorities centered on limiting harmful insurance practices, including prior authorization, step therapy, and non-medical switching, that act as barriers to care. We also pushed for increased NIH funding for skin disease research, specifically through the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), where only a fraction of the budget currently goes toward skin disease despite the enormous number of Americans affected. And we called for money paid on a patient’s behalf through a rebate program or coupon card to be applied to our out of pocket maximums or co-pays since those have been paid with real dollars.
Day two was Hill Day itself. Armed with our talking points, our stories and a clear set of legislative asks, 75 patients and advocates from 26 states fanned out across Capitol Hill for 105 legislative meetings with our federal representatives and their staff. I had the opportunity to meet with staff of Senator Elissa Slotkin (MI), Senator Gary Peters (MI), Representative Debbie Dingell (MI) and Representative Rashida Tlaib (MI). I brought the P/P community into each of those rooms with me. I talked about what it means to live with these diseases, the painful blisters, the emotional vulnerability and the disruption to “normal” work and family life. I talked about patients who’ve had to fight our insurance companies for access to treatments our doctors prescribed. And I made our asks clear. I left Washington having walked 18,000 steps on the Hill. I was tired, but I was hopeful, which honestly feels like the right combination for this kind of work.
One of the highlights of Hill Day is always the Congressional Briefing – a formal session that draws staff from advocacy organizations, congressional offices, federal agencies, industry and sometimes academic institutions. This year’s briefing gave our coalition an opportunity to present the case for skin disease policy reform in front of a broad, engaged audience, including the Deputy Director of NIAMS, and Representative John Joyce, the only dermatologist in Congress. What struck me, as it always does, is how much education and policy change is still needed. Skin disease carries a significant and often invisible burden, not just physically, but financially and emotionally. Patients face insurance barriers at nearly every turn. Prior authorization delays can mean weeks if not months without access to critical medications. Step therapy protocols force patients to try treatments their doctors have already determined won’t work for them, or that patients have already tried without success. And research funding for skin diseases remains dramatically underfunded relative to the burden these conditions place on patients and their families. For our community, specifically, those stakes are high. P/P can be life-threatening. They are chronic. They require specialized and on-going care. And they are rare enough that many legislators, and even some healthcare providers, have never encountered them.
Legislative changes are slow. It doesn’t happen from one meeting or one Hill Day. But it also doesn’t happen without them. I heard advocacy once described as a waltz, not a jitterbug. It will be slow, it will not seem like you are making progress, but forward movement is being made with every step and one day, the mission will be accomplished. Every advocate who walks into their congressional office and puts a human face on a disease makes it a little harder for that legislator to ignore. Every story shared, every policy ask make, every follow-up email sent will add up. I am grateful to the Coalition of Skin Diseases for making this event possible, including providing travel support so that patient advocates, who might not otherwise be able to attend, can have their voices heard.
And I’m grateful to every single person in our P/P community who has shared their story with me, trusted me to carry it to Washington, and continues to fight for a better path forward. If you ever thought about advocacy work and wondered whether you could do it, YOU CAN! You don’t need a policy background. You need your story, and your story is powerful. Our community deserves to be heard. And I’ll keep showing up until Congress hears us and helps us.