Two Days in the Halls of Power – Ep. 31
What does it actually look like to walk into a state legislature and fight for rare disease patients? This episode, I share what I learned from two days advocating at the NC Legislature with the Everylife Foundation for Rare Diseases — what surprised me about how state lawmakers think, why the knowledge gap isn’t what I expected, and what a single staffer’s comment about a stack of one-pagers taught me about what advocacy actually requires. Plus: three NC bills that still need your voice.
Two Days in the Halls of Power – Ep. 31 – The Fine, But Not Fine Podcast
Episode 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, healthcare 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.
One in Ten: Why Rare Disease Patients are Stronger Together
Picture a hallway, drop ceilings, fluorescent lights, institutional carpet, the kind of space that was designed by the lowest bidder and hasn’t been updated since. And people, so many people standing and milling about in that hallway, folders tucked under their arms, rehearsing something in their heads. Everyone gets 15 minutes, 15 minutes to walk into an office, shake hands, explain a complex piece of health care policy, make it feel urgent without feeling alarmist, make it feel personal without losing the legislator, and then leave because there are 12 more people lined up behind you, and their 15 minutes started about 45 seconds ago.
That’s what advocacy at the state legislature looks like. And I did it for two days. But here’s the moment I keep coming back to. We’re sitting with a staffer, they were all really great, genuinely engaged, and we asked him directly, what would it take to get more elected officials on board? What do we need to do? And he didn’t sugarcoat it. He said dollars and cents, show us the economics. And then he reached over and showed us his stack of one pagers that everyone who’d met with them before we had had left every group that had come through the office that day, and they were fine, they were thorough, and they looked like good documents, because that’s what they were. And then he looked at one, I make one for myself, and I connect the actual bills I’m going to talk about to my diagnosis, my experiences, my life, and he said, ‘You’ve got this.’ And then, maybe half jokingly, but not really jokingly, he said, ‘Could you teach the others how to do that? Maybe host a webinar,’ and you could feel exactly where he was coming from. And by the end of this episode, I think you will too, and I hope it changes how you think about what advocacy actually looks like, and who gets to do it.
So, let me back up. For those of you who are new here, welcome. The short version of me is this: I live with a rare and incurable form of lymphoma. It’s a cutaneous lymphoma, and it is called Mycosis Fungoides. It is a cancer, and it primarily presents on the skin, and it is incurable. There is management. There is increasingly advocacy, because if the medical system isn’t built to see patients like me, then someone has to get out there and help build it. I do volunteer with the board of the Cutaneous Lymphoma Foundation, and when the opportunity came to spend two days at the North Carolina legislature advocating on behalf of rare disease patients across the state, I signed up.
Now, I took two days off work, I drove an hour each way both days. I want to name that it’s not heroic or anything. It’s just because I think it matters who shows up for this work and what it actually costs them to do it. These aren’t people for whom advocacy is a job, they’re patients, they are caregivers, they’re parents, they’re people who carved out time from their actual lives because they believed it was worth doing.
The trip was organized and led by the Everylife Foundation for Rare Diseases, you know, part of the Rare Disease Legislative Advocates. And if you’re not familiar with the Every Life Foundation, they do something really strategically smart, because here’s the math problem with rare diseases. By definition, each individual condition affects a small number of people: Cutaneous lymphoma, progeria, Nieman prick, Ehlers Danlos. Any of these conditions on its own does not have the political weight to move the needle in a legislature, but when you bring rare disease patients together, when you focus on what we have in common, the systemic failures that affect all of us, regardless of our diagnosis, that picture changes completely. Rare diseases collectively affect more than 10% of the population.
One in 10 people, that’s not rare anymore. That’s a constituency, and that’s the model the Every Life Foundation is built on: United Voices focused on shared solutions.
What State Legislators Actually Want to Hear
Now, I’ve done federal advocacy before. I’ve been to Washington, and I want to spend a few minutes on something that really surprised me about the state level, because if you ever consider doing this, I want you to go in with the right expectations.
Every single meeting I had at the North Carolina legislature, every one ran through an economic frame. How does this affect our district? What does this mean for businesses? Where does the money come from? What does it cost if we don’t act, and that’s still present at the federal level, but it’s a little bit different. You might lead with a broader public health argument, or maybe even a moral framing. At the state level, the conversation was almost hyper-focused on dollars and impact. And I want to be clear, that’s not cynicism, that’s their job.
State legislators are accountable to very specific communities, specific districts, specific employers, specific tax bases in a way that federal representatives sometimes aren’t, and what it means for advocates is this: you need to know your economic argument as well as your clinical one. How many North Carolinians are affected? What does misdiagnosis cost the system? What does delayed treatment cost in hospitalizations, lost productivity downstream care. These aren’t just supporting data points at the state level, they’re often the lead.
Here’s something that surprised me. A lot of the people we met with had some connection to rare disease, a constituent they knew about, a friend or family member, a passing awareness. It wasn’t that rare disease was completely invisible to them. The gap was something different. They had no idea what living with a rare disease actually demands. So I’m going to give you a concrete example.
This year I have been back in the doctor’s office for light box treatment, instead of using my home equipment. So, three times a week, driving to a different city to get my treatment. And let’s put this into a number that can actually get some attention.
This year, I have approximately 150 medical appointments for treatment. 150 that’s not counting labs, that’s not counting my appointment with my specialist, that’s not counting my primary care person, it’s not the dentist, it’s not the phone calls to fight anything or to get prescriptions, that’s just one of my treatments.
Now think about that through a legislator’s lens, specifically the economic one they’re already using, what employer out there accommodates 150 appointments a year? You know, I happen to have an exceptional employer, I will go there, but what does that do to someone’s ability to hold a job, and if they can’t hold a job, what does that mean for Medicaid?
North Carolina, as well as many other states, has been debating worker work requirements for Medicaid eligibility. What happens to a rare disease patient who genuinely cannot maintain consistent employment because their treatment schedule is practically a part-time job? That’s not a health policy question anymore, that’s an economic question, a workforce question, a question about what quote work requirements actually mean when the barrier to actually working is the illness.
That’s the knowledge gap, not what is rare disease, but what does it cost the person living with it in ways that ripple into every single system we’re already trying to manage. Which is why that moment with that staffer struck me. We’d asked him genuinely, wanting to know what would move the needle, and he told us economics, and then he showed us the stack, all those one pagers from all those groups, all perfectly competent, all reading like policy briefs. And then he looked at mine, and something shifted, because mine wasn’t a policy brief, it was a bill connected to a person, mine did, my diagnosis, my denials, my life. That’s what he responded to, and that’s what he was pointing at when he half jokingly asked if I could teach others.
The policy knowledge gap is real, but it is fillable, and we are uniquely positioned to fill it, because we have something no lobbyist has. We are the patient.
Which brings me to the most important thing I want to say about state advocacy. It is more accessible than you think.
Those institutional hallways full of people with 15 minute meetings, they’re open, anyone can get in that line. State legislators are more reachable than federal ones. The staff to constituent constituent ratio is significantly different. The stakes are more local, and the path from ‘I live in your district’ to ‘I’m sitting across from your chief of staff’ is a heck of a lot shorter than you’d expect.
I went from my home to Raleigh, an hour’s drive, and I had real conversations with real decision makers about real legislation. That doesn’t happen everywhere, and it should happen more here.
Three Bills. One Ask. Your Voice.
So, what were we actually asking for? And I want to walk you through each bill, because I think they matter, and because if you’re in North Carolina, these are still active, and your voice counts.
So HB 1166 fund and restructure the Rare Disease Advisory Council. North Carolina actually has a Rare Disease Advisory Council, believe it was the first, but it’s not funded and it’s under-resourced in ways that can limit what it can actually do, and this bill would change that. It would give the council the structure and funding it needs to collect all the necessary data about rare disease in North Carolina. How many people are affected by what conditions and with what outcomes and with what gaps and access. And here’s why that matters, even if you’re not a data person, legislators cannot craft good policy without good data, and right now decisions about rare disease get made pretty much in an information vacuum. HB 1166 builds the infrastructure to fill that vacuum. It’s not glamorous, it’s foundational, and foundational work is what makes everything else possible.
Another is HB 567 biomarker testing access. Because you cannot treat what you cannot identify, and for rare disease patients, getting the right diagnosis or the right treatment plan requires specialized testing, so it could be genetic tests, biomarker tests, molecular analysis that go beyond standard diagnosis diagnostics. These tests exist, they work, they’re relatively inexpensive to implement versus other tests, and patients often can’t access them because insurance coverage is inconsistent and arbitrary. What HB 567 does is improve access to that testing, fewer years of wrong diagnosis, fewer patients cycling through treatments that don’t work for conditions they don’t have, faster paths to care that actually works and fits. The road to a rare disease diagnosis is almost always really long, and anything that can shorten that is really worth fighting for.
And lastly, SB 316 this is a prior authorization reform. And prior authorization is one that makes me the most angry, I’ve done a whole episode on it, but prior authorization is the process by which insurance companies require doctors and patients to get approval before patients can receive certain treatments. In theory, it is a cost control measure. In practice, it is a bureaucratic wall between patients and their care. The Senate passed this bill. I think it’s now sitting in a House committee, and it needs to move.
Here’s what the bill addresses: the delays, the opacity, the lack of recourse. But the piece that’s most personal to me, the piece I talk about in every single meeting is who gets to deny your care, because that’s what’s happening. My prior authorization was denied by an LPN, that’s a licensed practical nurse and a pharmacist. I want you to sit with that for a second. My treating specialist, who has spent their career studying this disease made a treatment recommendation based on known protocol, accepted protocol for my rare disease, and the insurance company had someone with no specialized knowledge of my condition review it and say no, it’s not medically necessary.
SB 316 would require that denials be reviewed by a doctor with relevant expertise, not just any clinical reviewer, someone who actually knows the condition they’re making a decision about. That is not a radical ask, that is a basic standard of care, patient. Patients who can’t wait should not have to, and patients who get denied shouldn’t have their cases decided by someone who’s never treated what they have.
These aren’t partisan issues. I met with Democrats and Republicans, elected officials, and their staff, and nobody in those rooms was for sick people not getting care. The debate is about mechanisms and costs, and that’s where advocates can move the conversation, and where your story told directly to a representative can make a difference.
What Fifteen Minutes Feels Like From the Inside
I want to step back from the policy for a minute, because there’s a texture to these two days that I’ve been sitting with, and I don’t want to skip over it. The representatives and staffers I met were almost without exception kind, genuinely, not performatively. You could tell when someone was looking at the clock versus when someone was actually listening, and more often than I expected, people were listening.
But, the rhythm of the day is genuinely surreal. You’re one of dozens of groups cycling through offices, you wait in that hallway, you go in 15 minutes, you come out onto the next one. And I kept thinking, how does anything rise to the top of this? How does a staffer who’s seen 30 groups in a day, each with their own bills, their own materials, their own story. How do they hold any of it? How does something become memorable? And I think the answer is the same thing that staffer was pointing at when he looked at my one pager.
The moments I felt most effective were the ones where I wasn’t delivering talking points, I was telling my story. I am the constituent. I live with this. Here’s what it costs me, and here’s what your vote could change about that. That’s not something a lobbyist can do. It’s the thing only patients can offer, and it’s free, or free-ish. You don’t need a coalition or a budget or communications team. You just need to be willing to make it personal.
And the drive home, you know, on that first day, we’re learning about all of these things, you know, somewhere between Raleigh and home. You know, I was tired in a way that felt good, like I’d spent something real Just did good work in the right direction. And I thought about whether any of it would land, whether meetings would translate to action, or whether they dissolve into the volume of everything else those offices were managing, and I thought, well, the alternative is not going, and that’s not an option I’m willing to take.
How to Show Up, Even if You Can’t Make the Drive
Here’s what I want to leave you with. I think state level advocacy is underutilized. I think a lot of people assume that the federal level is where the important work happens, you know, it’s the big stage, the major votes, the national coverage, and yes, federal advocacy matters enormously, but state advocacy is accessible in a way that federal advocacy often isn’t.
Your state representative is a heck of a lot closer to you than your US senator in almost every meaningful way. Their staff is reachable, their schedules are more open, and they are making decisions that directly affect what healthcare looks like in your state.
And if you are in North Carolina, these bills still need your voice. Look up your state representative and your state senator. You can go to ncleg.gov that’s ncleg.gov. It makes it easy. Call, email, set up an appointment to meet with them. Do it in Raleigh, or do it when they’re home in the district.
And if you want to get connected to advocacy work in your own state, wherever you live, I’d encourage you to start in two places. First, the Every Life Foundation for Rare Diseases and the Rare Disease Legislative Advocates, they build these coalitions, they do the training, they make it possible for patients to walk into offices with something real to say, but second, and this really matters, connect with the organization that focuses on your specific disease.
For me, that’s the Cutaneous Lymphoma foundation. For you, it might be something completely different. Those organizations often have their own advocacy programs, their own state level relationships, their own ways to plug in. The rare disease coalition and your specific community aren’t either or, they work better together.
And if you’re a patient who’s watching from the sidelines, thinking you don’t know enough, or your condition isn’t common enough, or one person can’t make a difference, I want to push back on all of that. You know enough because you lived it. Your condition matters because you have it. And one person in a 15 minute meeting in a fluorescent lit institutional hallway with a one pager they made themselves, that person can matter more than they know.
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.