The Risk of Speaking Up: What Advocacy Really Looks Like

By Gillian Sapia, RN

Being an advocate in today’s political climate feels like walking a tightrope across a minefield. Every step carries the weight of my words, the risk of being misunderstood, and the fear of saying something that could hurt the very people I’m trying to help. My community is small—ultra-rare—and incredibly vulnerable. I don’t get to speak just for myself. Every time I open my mouth, I carry thousands with me.

Sometimes I wonder what happens if I say the wrong thing. What if I praise the NIH and get labeled a liberal activist? What if I criticize the FDA’s rigidity and someone calls me anti-science or worse—political? What if my work gets discredited because someone doesn’t like how I said a hard truth? The thought that a single sentence might cost my community a shot at treatment keeps me up at night.

But I speak anyway.

Because I have a little girl at home, and she is worth every risk.

I Don’t Want to Be Political—I Want to Be Heard

Advocacy isn’t about choosing sides. It’s about choosing people. Real people. Families who can’t afford to wait ten more years for a drug that already showed promise but got rejected because 11 surveys were missing from a clinical trial. Children who are denied therapies because CMS still doesn’t understand what this disease actually does. Parents who are spending thousands on formula just to keep their kids stable, while agencies argue whether it qualifies as “medicine.”

I’ve supported reforms from both parties. I’ve had to praise and challenge both sides. But when you're advocating for a disease that only affects 3,500 people in this country, neutrality isn’t a luxury—it’s a necessity.

I am not interested in being liked by one side or the other. I’m interested in saving lives. And sometimes that means saying the uncomfortable thing, at the uncomfortable time, in the most public way possible.

Willing to Take the Fall

If something I say upsets the wrong person in power, I know it could backfire. That terrifies me. But I’ve made peace with being the one to take the blame if it means protecting others in my community. I’m willing to be the bad guy. I’m willing to take the fall. I’ll be the one who gets labeled “difficult,” “too emotional,” “too loud.” Because someone has to break the silence.

I don’t wish this role on anyone. It is exhausting, and at times, isolating. But I can’t unknow what I know. I’ve read every study, run the numbers, and held the stories of parents whose children are suffering despite doing everything right.

And then there’s my daughter. The reason I get out of bed on the hardest days. The reason I keep going even when the doors keep closing.

She makes me want to move mountains, I drag them into the room and climb to the top and shout.

I Will Keep Shouting

This is what advocacy looks like. Not press conferences or perfect words. It looks like fear, sacrifice, risk—and choosing to speak up anyway.

Because silence has never saved anyone in my community.

So here I am. And here I’ll stay.