A Chat About Legislative Advocacy

Gabriella: Before we start, I want to make it clear who this is for. This isn’t meant for professional advocates or trained lobbyists. It’s for parents, patients, and caregivers, regular people, who care about PANS/PANDAS and feel overwhelmed by the idea of talking to legislators.

Jessica: I’m really glad you’re saying that out loud, because I think people look at “state leads” and assume we’re somehow different. We’re not. None of us came into this with training. No one taught us how legislation works. No one handed us a script.

Every state lead I know started out just like most families and patients: anxious, unsure, and learning as we went.

Gabriella: Exactly. Leads are just people who stayed involved longer. Over time, they end up having more detailed conversations about costs, policy mechanics, or how a bill moves, but that comes later.

And it’s important to say this clearly: legislative advocacy doesn’t work if only leads are talking. It takes everyone.

“I don’t know enough to do this.”

Jessica: This is probably the biggest misconception we run into. People think, “I don’t know enough. I’m not qualified.”

They think they need to understand the science, the insurance system, the studies, the budget impact—everything.

Gabriella: Or that they’ll be discredited for not knowing the “right” words.

State Lead: Exactly. But that’s not what legislators or staff expect from constituents. They’re not looking for you to be a policy expert.

What they’re actually listening for is: “How does this issue affect people who live here?”

That’s where parents and patients are uniquely powerful. You’re not competing with experts; you’re providing something experts can’t replace.

“But I’m not comfortable calling or meeting with them.”

Gabriella: People tell us all the time, “I want better support in my state… but I’m terrified to call, write testimony, or meet with a legislator.”

Jessica: That fear makes total sense. Most people have never done this before. And many families in this community have spent years being dismissed by doctors, schools, and insurance companies.

So it’s understandable that the idea of walking into another system feels intimidating.

What helped me was realizing this isn’t a debate or a performance. You’re not there to convince someone with perfect language.

You’re there to say: “This is what happened to us, and this is why it matters.”

The mindset shift that changes everything

Gabriella: What’s the mindset shift that actually helps people move forward?

State Lead: Realizing that you don’t need to carry the whole issue.

You don’t need to explain all of PANS/PANDAS. You don’t need to defend every treatment or cite every study.

You only need to explain your part—your household, your body, your child, your finances, your ability to work and function.

Legislators can pull data later. What they can’t get without you is the human cost of inaction.

“Okay, but what do I actually say?”

Gabriella: If someone is staring at a blank page or freezing before a call, where do they start?

State Lead: Don’t try to sound official. Just be yourself.

At its core, it’s really simple:

• Who you are and where you live
• What happened
• Why it matters
• What you’re asking for
  • How did the delays or denials by insurance carriers impact care

That structure works for an email, a phone call, or a meeting. You can always improve it later.

Learn more about: The Cost of Inaction

Making this manageable, even on days when you have less energy

Gabriella: People are tired. Let’s lower the barrier.

State Lead: Yes, this is key. Before you write anything, take two minutes to jot down a few bullet points. No need to polish. No pressure.

Quick prep bullets

• One short impact statement: “This is what the lack of support did to our lives.”
• One before/after moment
• One real number you actually know
• One clear ask
• One closing thank-you

And about numbers—this can be confusing. They don’t have to be perfect. “Roughly,” “approximately,” or “over the course of a year” is fine.

Examples:

• How many school or work days were missed
• Out-of-pocket medical costs
• Lost wages or taxable income loss due to reduced work or leaving a job
• Number of insurance denials

You’re not being audited. You’re just showing the impact.

Learn more about: Talking Points

What this can actually sound like

Gabriella: Can you give a general example without getting too medical?

State Lead: Sure. Something like:

“Before this started, my child was doing well in school and our life felt stable. After the abrupt onset, everything changed quickly. Attendance fell apart, learning became difficult, and we had to pursue accommodations just to keep them connected to school. At the same time, accessing appropriate care was challenging, and insurance denials delayed treatment. The impact wasn’t just medical; it affected our family emotionally, financially, and professionally.”

That same structure works for adults, too. The details change, but the story doesn’t.

You don’t have to include everything

Gabriella: We have guidance on financial impact, school impact, and delays in care, but this isn’t about writing a dissertation.

State Lead: Exactly. Think of those topics as options, not a checklist.

Some people have the capacity for longer testimony. Others can only manage a short email. Both matter.

Often, legislators will only read the first paragraph. That’s why a clear overall impact statement is so important.

(Reverse question) Why does individual effort really matter?

State Lead: I want to flip this for a second, because people ask this a lot.

They’ll say, “Why does my one email or call matter? Doesn’t the legislature already know this is important?”

Gabriella: This is such an important question.

Here’s the reality: every state introduces hundreds, sometimes thousands, of bills every year.

Legislators can introduce bills, sponsor them, co-sponsor them, and talk to colleagues, but they can’t actively fight for all of them. It’s impossible.

So they have to decide:

• Which bills get their time?
• Which bills do they push in committee?
• Which bills do they advocate for behind closed doors?

And that decision comes down to one core question:

“Is this important to my constituents?”

If a bill doesn’t feel important enough for people to show up—through emails, calls, testimony, or meetings—it becomes very hard for a legislator to justify spending political capital on it.

So the hard truth is this: we all have to make a bill matter together.

If it’s not important enough for us to speak up, even if we’re not perfect, why would a legislator fight for it?

That doesn’t mean everyone has to do everything. But participation matters. Numbers matter. Presence matters.

Where state leads fit into this

Jessica: And that’s where leads come in – not as replacements, but as organizers.

Leads may handle deeper conversations over time, but they can’t substitute for constituent voices.

Gabriella: Exactly. Advocacy isn’t top-down. It builds over time. One voice becomes five. Five become fifty. That’s when things shift.

State vs. federal: same skill, different level

Jessica: ASPIRE focuses on state-level work, even though you collaborate with organizations doing federal advocacy.

Gabriella: Right. But the skills people are learning work everywhere, including, telling your story, making a clear ask, following up.

Once someone is comfortable contacting a state representative, reaching out to a member of Congress feels far less intimidating.

Stories move decision-makers

Jessica: People underestimate the power of stories.

Gabriella: They really do. Staff remember them. Legislators repeat them. They shape how issues are discussed internally.

Jessica: That’s why this matters so much:

Your stories are powerful, and lawmakers need to hear them. When you contact your lawmakers, tell them how policy decisions have shaped your life, because real stories move decision-makers.

Where to start (without overwhelming yourself)

Gabriella: If someone wants to do something today, what’s the best place to begin?

Jessica: Pick one resource — not all of them.

• Legislative Resources Hub: https://aspire.care/resources/legislative-resources/
• Legislative Toolkit & Handouts: https://aspire.salsalabs.org/legislativetoolkit
• Legislative Writing & Talking Points: https://aspire.care/blog/legislative-talking-writing-points/

Start small. One email is still advocacy.

One last thing

Gabriella: What do you want someone reading this to walk away believing?

Jessica: That they’re allowed to do this. You can do this!!!

You don’t need perfect language. You don’t need to know everything. You don’t need permission.

You just need to be a constituent with a real story and the willingness to speak up.

That’s how every single one of us started.

 

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Gabriella True and Jessica Gowen serve on ASPIRE’s Executive Board and were founding members.