When HAE Advocacy Opens Doors You Never Expected

Between July and August, my advocacy changed shape three times.

In July, I joined the U.S. Hereditary Angioedema Association for Capitol Hill Day. In August, I served as a team leader for the EveryLife Foundation's Rare Across America program and led two separate meetings with congressional offices. That same month, I was selected by the Maryland Department of Health to serve on its Beneficiary Advisory Committee.

Written together, those sentences sound like a smooth progression. Living it did not feel nearly that polished.

I was proud and intimidated while still managing hereditary angioedema, multiple sclerosis, treatments, fatigue, pain, brain fog, and the rest of my life. I never stopped being a patient to become an advocate instead. Both roles kept showing up in the same body.

Starting with the HAE community

Capitol Hill Day brought me into a space centered on the disease that first showed me how dangerous it can be when patients are not understood. The goal was not simply to explain HAE. It was to help lawmakers understand what their decisions can mean in the daily life of someone who has it.

Policy can sound distant until a patient explains the fear of an airway attack, the need for available treatment, or the difference knowledgeable emergency care makes. Those details show whether a policy works once it leaves the page.

I have written before about my HAE diagnosis and the systems patients navigate. Capitol Hill Day was different: I was using what I had lived to help decision-makers consider other patients before more harm occurred.

Making room for more voices

Rare Across America widened that responsibility. As a team leader, I helped advocates prepare, created room for different experiences, kept two separate meetings focused, and connected our stories to shared policy issues.
That required a different kind of listening. The rare-disease community includes people with very different diagnoses, treatments, barriers, and lives. Leadership meant helping each voice reach the room without reducing it to a talking point.

My advocacy does not fit inside one diagnosis. HAE brought me into rare-disease advocacy, but I also live with MS and advocate alongside disabled and chronically ill people. The need for patients to be included crosses those communities.

A seat inside the process

My Beneficiary Advisory Committee appointment began Aug. 1. It is an initial two-year term, with the potential to serve for up to four years.

This role feels different from a single advocacy event. The committee creates an ongoing place for people who receive Medicaid to tell the department how its programs function in real life.

A service may be covered while transportation, provider shortages, inaccessible communication, or administrative requirements make it unusable. Data may identify a problem. People living inside the program can explain how it actually unfolds.

I cannot represent every Medicaid beneficiary or disabled and chronically ill person. I can speak honestly, listen to experiences different from mine, and question policy language that hides the human impact.

The appointment is exciting, but it carries weight. Being invited into the room does not guarantee that anyone will act on what patients say. It does create an opening, and I intend to use it.

How advocacy grows

When I look at these experiences together, what stands out is not a list of titles. It is how advocacy can grow.

It may begin with learning enough to protect yourself. Then you share what you learned with another patient. Eventually, your voice may reach a lawmaker, help lead a group, or earn a place on a committee. The room gets larger, but that does not make the first step less important.

Most people will never become public advocates, and they should not feel pressured to. Change can mean explaining HAE to an emergency team, completing a survey, correcting a medical record, sharing reliable information, or telling your family what you need. It can also mean resting while someone else speaks.

A voice does not become valuable only when it reaches Capitol Hill. Mine began in much smaller rooms, with questions I was once afraid to ask and experiences I was not sure anyone would believe.

We do not all have to advocate in the same way. We can begin in the room we are already in, with the truth we know and whatever we realistically have to give. That is how patients begin shaping what happens next.