In this episode, I break down why advocacy isn’t just a buzzword. It’s a lifeline for those of us living with rare diseases and chronic illness. I talk about how real change doesn’t only come from big moments on Capitol Hill, it starts in the everyday: telling your story, joining forces with patient groups, challenging broken systems. 

I get real about how speaking up, educating others, and writing to lawmakers can actually move the needle. Advocacy isn’t about being loud, it’s about being relentless, informed, and united. If you’ve ever wondered whether your voice matters, this episode is for you. Because it absolutely does.

High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 – The Fine, But Not Fine Podcast

When you treat a cancer that can't be cured, you don't just manage the disease, you manage what the treatment does to the rest of you. My liver numbers climbed high enough that I had to come off my medication entirely. This episode is the cascade that followed: the referral, months of waiting, vials of blood, a FibroScan, and the relief of an answer.

1. High Liver Enzymes on Interferon: Why I Had to Stop Treatment – Ep. 33 13:25
2. 150 Appointments: What Rare Disease Treatment Actually Costs – Ep. 32 10:01
3. Two Days in the Halls of Power – Ep. 31 20:41
4. Inside Rare Disease Week: Taking Advocacy to Capitol Hill (Part 2), Ep. 30 08:06
5. Inside Rare Disease Week: A Patient Advocate on Capitol Hill (Part 1), Ep. 29 09:26

Transcript

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.

Let’s Talk About Advocacy

Hey everyone, and welcome back. I want to talk about advocacy today. It may sound big and daunting, but I promise it’s not. Because if you’ve been listening to this podcast, you know, my goal has always been to share the kind of information I wish I’d had when I was first diagnosed, or when I experienced changes in treatment, or anything that made me seek out more information, right?

Why Real, Relatable Information Matters

And it’s… what I really wanted, was something real, relatable, and honestly, not buried in medical jargon in a boatload of scientific terminology, right? And so many of you have told me that this podcast feels like that, and that is exactly what advocacy looks like. It’s not just the big stuff. It is the small, everyday ways we show up for ourselves and for each other.

The Heart of Advocacy

So, I started this podcast because there was a void. Yes, there is some great information out there, really, really good quality information. But to me, much of it feels clinical, serious, distant, and, dare I say, produced, or maybe it’s over produced. And I want to create a space that says, hey, I’m living this too. You’re not alone, and that’s really the heart of advocacy to affect change and help someone else feel a little less alone.

Why I Advocate

Now I advocate for several reasons, but in general, I do it to help others understand what we go through as patients, to help people like us feel okay about what we’re facing, and to change the parts of the healthcare system that need to change, because it will not change unless we speak up.

Where Advocacy is Most Needed

So let’s talk about why advocacy is so needed. I’m going to start with prior authorization. If you know, you know. These hoops of prior authorization exist because our system seems to lead with cost savings, not patient needs. When did that change? When we speak up about how they delay care or cause harm, we shine a light on things that policymakers and insurance companies just do not feel every day like we do.

Underfunded Research

Research, really underfunded research. Rare diseases do not get the spotlight they deserve. With a limited population to test on, it’s difficult to do and secure funding to support research, and without patient voices pushing for funding, and those of us who are patients participating, many of us will be left with outdated treatments or no treatments at all. And for me, Mycosis Fungoides is currently an incurable disease. To find a cure, we need to fund research.

Specialty Pharmacy Barriers

And specialty pharmacies. I’ve told stories about dealing with what I believe are ridiculous and or outdated policies and procedures of specialty pharmacies. These are not just personal headaches. They are barriers that make it harder for patients to get quality care.

Advocacy is Education

And when we share all of these realities, we’re not just venting, we’re educating. That is advocacy.

What Advocacy Actually Looks Like

So what does advocacy look like? It does not mean that you have to stand up in front of a podium or testify before Congress, though, if you want to, that’s awesome, and there are some great organizations out there who will help you do that. But advocacy can also be sharing your story with a friend or a coworker who is curious. You could be explaining why your treatments matter, when someone questions them. It could be showing up for someone newly diagnosed and saying, I’ve been there too. And supporting the organizations that fight for research funding and better policies, because sometimes advocacy is just being visible, living your life honestly, not hiding your disease and reminding the world that patients are people first.

Every Bit of Advocacy Matters

And every bit of advocacy chips away at stigma and isolation. It puts pressure on systems that need to change, whether that’s insurance companies that love their prior authorization hoops or lawmakers who decide how much funding goes to rare diseases. When we share what it’s really like, the messy, frustrating and sometimes funny parts, we help each other and we push for better care.

How You Can Start

Okay, so what can you actually do if you’re thinking, I am not an activist. That is not my thing. Trust me that it can be your thing in your own way. And here are a few things to consider, or a few ways to start.

Start Small, Speak Up

Talk to people in your life, tell them what prior authorization is, why they’re awful, or what it’s like to manage a rare disease, most people have absolutely no idea. I mean, I know I didn’t until I had one you could join a patient organization.

Support Patient Organizations

So many rare disease nonprofits depend on patient stories to push for funding and policy change. Sharing your story can help others and help you, and if you have the means support these organizations financially — having staff to effect change by pushing for research, ensuring we have the medications we need, and bringing us together for much needed support is worthy and it takes money.

Reach Out to Lawmakers

You can write an email, you can make a phone call. Lawmakers do listen when enough people speak up, especially when we bring real stories, not just stats.

Be Visible, Be Real

You can be visible. That means sharing your story publicly or just not apologizing for what you’re going through. You remind people that patients are more than chart notes, and honestly, we need to support each other.

Send a podcast episode to someone newly diagnosed, join an online patient group, be a safe space for questions, that ripple effect is advocacy too.

Even the Little Things Matter

Thanks for listening today and for being a part of this tiny corner of the world that believes we deserve better and wants to take the action to make it happen.

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.