This episode is the “before.” Before I head to Washington, DC for Rare Disease Week on Capitol Hill, I share why I said yes, how I’ve prepared, and what I’ll be advocating for as a rare disease patient. We talk about insurance denials, the Protect Rare Act, and how advocacy can look different for each of us—at the national, state, or local level.

World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38 – The Fine, But Not Fine Podcast

Rare lymphomas are hard to build an awareness campaign around — and a global awareness day does matter. Why one day of visibility does what three thousand patients a year can't do alone.

1. World Lymphoma Day Belongs to the Rare Ones Too – Ep. 38 16:37
2. Did I Really Have to Say That? Disclosing a Cancer Diagnosis at Work – Ep. 37 20:03
3. Why Mycosis Fungoides Takes Years to Diagnose: What I've Learned – Ep. 36 31:23
4. The Mycosis Fungoides Rule Out – Ep. 35 19:32
5. Treatment Fatigue: Doing the Hard Thing Forever With No Finish Line – Ep. 34 08:30

Podcast Transcript

Kelly, you look fine, but you’re not fine, and that’s exactly what we’re here to talk about. Welcome to Fine, But Not Fine, the podcast about navigating rare disease, health care battles, and the messy reality of chronic illness. I’m Kelly Paul, and I’ve been living with Mycosis Fungoides since 2015. This is a space for real talk, real experiences and practical advice, because surviving is one thing, but figuring out how to actually live, that’s the hard part.

Hello, everyone. I want to talk about something I am doing this week and what it took to get here. I am in Washington, DC for rare disease week, on Capitol Hill with the Cutaneous Lymphoma Foundation and the Everylife Foundation for Rare Diseases.

And this isn’t just a trip I said yes to. For a long time, my relationship to the healthcare system, you know, insurance approvals, policy, it’s been reactive. I respond to denials, I appeal decisions. I adapt when something changes. I really kind of endure it, right? And this is different. This is stepping toward the system instead of only surviving inside it.

So this is my very first time advocating on Capitol Hill. I’ve never attended rare disease week. I have never walked into congressional offices to talk about my life in policy terms. And sure, there’s a voice in my head that kind of says, Who do you think you are? But there’s another voice too, the one built from years of navigating the system that says you understand exactly what’s broken, and that’s enough.

So rare disease week on Capitol Hill is actually a multi day event, and it brings together patients, caregivers and advocates from across the country. And what we’re going to do is spend time learning how federal health policy works, which proposals directly impact the rare disease community, and how to connect our lived experience to policy change in ways lawmakers can actually use. Then we’ll take those stories and the meetings with members of Congress and their staff. You know, the place where decisions are made, shaped and sometimes stalled.

So the reason I wanted to do this isn’t because I suddenly feel that I’m fearless, right? I said I wanted to do this because I am tired of how normal it’s become to fight for care that’s already been deemed medically necessary and our insurers are contractually obligated to pay.

I have talked on this podcast about prior authorization. I have talked about denials. I have talked about how exhausting it is to repeatedly prove that you need the treatment your doctor prescribed. And at some point, I realized, if I am already spending this much energy navigating a broken system, I want some of that energy to go towards changing it.

So, as part of my preparation, I was looking at everything I need to do, right? So how can I as a patient, someone who pays attention. How can I, you know, tell a story that opens a door? Right? So I needed to prepare. I didn’t want to show up with just feelings. I mean, I have them, but I want to show up with some clarity. So I did a few things.

One of the things I did is I made pin-on-buttons, you know, that you put on your jacket or put on your shirt or whatever, and it’s three inch square button, and it says Denied For Being Rare. And they’re small. They only have four words, but those four words say a lot. They name the problem directly, and they do not soften it, because so many of us know what rarity itself, or know that rarity itself becomes a liability in the system.

I also created a one pager to hand out to staffers and elected officials, and they are very concise and very intentional. They include the specific action I’m asking lawmakers to take, a clear summary of my story, it is not everything. It’s just what illustrates the problem. I have cited sources showing how insurance denials harm patients, and why this community, the rare community, is especially vulnerable in a system built around averages instead of outliers. Because rare disease patients are constantly asked to prove ourselves, to justify our care, to explain why standard processes don’t work for us.

So, I’ve been doing my work so that I can show up prepared. And I think there is a misconception that advocacy is only about showing up and speaking from the heart. But for patients like us, showing up already takes energy and speaking from the heart often comes at cost. Preparing this way is how I protect my energy and how I make sure my story is connected directly to outcomes, not just empathy. I don’t want sympathy. I want change.

So while I’m in DC, I am advocating for the passage of HR 6094, and S3551, essentially known as the Protect Rare Act. At its core, this legislation protects access to medically necessary evidence based treatment without harmful delays caused by insurance denials. And specifically, this is for those on Medicare and Medicaid. I am not on Medicare or Medicaid, but I know that my story fits the bill, and we’ve got to start somewhere, right?

Because for rare disease patients, these delays aren’t abstract. They can mean disease progression. They can mean losing the only treatment option that works. They can mean starting over yet again with appeals, tests, and justifications. And this bill matters because it centers clinical expertise and patient outcomes over bureaucracy.

And there’s also something that comes with doing this right. I’m becoming the example. I’m not just telling my story. I’m standing in for people who could not take the time off work, who are too sick to travel, or who don’t yet have the language to share what they’re experiencing, and that’s an honor, and it’s also kind of heavy.

I’m really excited to go, but I’m also aware this does require some emotional labor. You have to compress years into minutes and trust that it lands.

I also want to say this, especially if you’re listening and thinking there is no way you could ever do something like this. Advocacy. It doesn’t only happen in Washington. DC. Rare Disease week on Capitol Hill is just one version of advocacy it’s a big one, but there are also rare disease days and advocacy efforts happening at the state and local levels all over the country.

Many states host rare disease days at their capitols. Advocacy organizations often organize local events, virtual education sessions or action alerts, and these are things that don’t require travel or time off work, right? So not a financial investment. And if this episode sparks even a little curiosity, I’d encourage you to explore what exists where you live. And it’s not because everybody needs to be an advocate or because it’s your responsibility to fix the system, but because knowing what’s available gives you options, and options matter when so much already feels out of your control.

And it’s worth noting that participation does not have to look like what I’m doing here. It can be reading about rare disease policy when you have the energy. You could be signing an advocacy alert once in a while, or sharing a resource with a provider or a friend or an employer, or just learning the language that helps you describe your experience, all of that counts. Advocacy isn’t about volume or visibility. It’s about finding the level that fits your life. And I wanted to record this episode before going to DC, because advocacy doesn’t start in DC. It starts when you decide your experience isn’t just something to endure, it’s something that can inform better systems.

And this episode is the before, the preparation, the moment where intention that turns into action. Now, when I get back, I’ll share what this experience was really like, what surprised me, what was hard, what gave me hope, and what advocacy looks like when you’re standing in it for the first time, in something really big. Because I have no idea what the outcome will be, but I do know this. I’m going prepared, I’m going informed, and I’m going because rare disease patients deserve better than being denied for being rare.

Thanks for listening to Fine, But Not Fine. If this episode resonated with you, subscribe so you don’t miss what’s next, and if you’ve got a story question or just need to vent, reach out. I’d love to hear from you until next time, take care and keep on going.