Tré LaRosa shares his journey as a writer and advocate living with cystic fibrosis, from navigating barriers to accessing treatment to speaking on Capitol Hill. He reflects on the power of self-advocacy, the impact of community, and the drive to create lasting change through lived experience and purpose.
Transcript
Hi, my name is Tré LaRosa. I’m a scientific project manager and writer in Arlington, Virginia, just outside the Washington, D.C., area. I am a columnist for Cystic Fibrosis News Today, writing the “Mutations & Conversations” column.
Advocacy means a lot of things to me. It means a lot to me right now, and it’s meant a lot to me throughout my life. It’s just looked a lot different throughout my life. For me now, I think of advocacy in sort of two ways. I think of advocacy in the way of advocating for myself at doctors’ appointments or when interacting with healthcare providers or when filling medications, and how I have to advocate because I know my lived experience and I know what I know about my condition.
And a lot of times, it requires trust in oneself to advocate for oneself when it comes to your lived experience with your chronic disease.
Advocacy to me also means advocating for a better world for those of us who deal with chronic disease, which can mean advocating at the legislative level. It can also mean advocating to your clinician — maybe not just explicitly and only about your singular condition, but what you’re hearing from your peers with your disease. Which can mean often giving perspective to your clinician that maybe other people aren’t able to provide.
So advocacy for me kind of looks like the very specific granular, which is the own singular lived experience. And then it’s also the bigger picture.
I was living in Florida at the time when the city I was living in got hit by a hurricane, and I was trying to fill one of the medications I had recently been on. It’s a recently approved drug class within the last five to 10 years, and that’s been really transformative for me.
And I’d only been on this medication for about a year when this hurricane struck. There was a hold on all the ZIP codes within about an hour of my location, and I was unable to get this medication. I was very scared about what would happen if I went without this medication for a few days.
And so I had to do everything in my power. I had to call my clinic. I had to call my pharmacist. I had to call the insurance. I had to call all kinds of people to try to get this medication, and I was able to obtain it through a sort of emergency situation where I was able to get the medication overnighted. But I don’t know that — had I not known who to call and had the right resources in place — that I would have been able to obtain this medication.
The second story I’ll share is that I was invited to actually go to Capitol Hill and speak to legislators and staffers on behalf of several policies that would have benefited the cystic fibrosis community. And this experience was really profound and really eye-opening to me because I was advocating at the highest level possible.
In that moment, I learned a lot about how you can’t share every little detail about your lived experience when you’re advocating for something, because oftentimes you are unable to communicate all the little nuances. And so it was the first time that I had to really shift and advocate on behalf of people with CF without being able to assume that the person I was advocating for understood the condition.
So I really had to advocate about the most time-sensitive, urgent details to try to ensure that there was an understanding of the impacts of these policies on people with cystic fibrosis.
One of those policies was a bill that was intended to help support the development of antibiotics, which was extraordinarily near and dear to my heart as my sister had had two double-lung transplants, and she unfortunately dealt with really highly resistant bacteria. So I’m very passionate about the need for better antibiotics.
If I were speaking to somebody who’s really interested in getting involved in advocacy, the thing I would highlight is the first thing is the most important thing. I think that one of the biggest challenges with advocacy is we become advocates because we believe that things can be better. We want to solve these problems. We resolve things that have urgently affected our lives, or the people we love, or the people we care about, or just our peers in our community.
And that’s a really important energy — but you can’t get anything done if you don’t do something. I think that the important thing is to figure out what your first something is, and maybe that’s gaining a little bit of a better understanding of a specific nuance of a challenge you’ve had, and talking to your clinician about it so that you can better understand how you could advocate for yourself or other people.
And then it grows from there — getting involved with the community, talking to other folks, just brainstorming with other people with CF. It doesn’t even have to be brainstorming. It can be venting about a challenge you’ve struggled with. And that can be just a form of advocacy in and of itself, because it’s sharing a lived experience that somebody else might relate to.
So for me, I think that if I were to just be getting into advocacy, I would really like to tell that version of myself that it’s just really important to keep moving forward and keeping your eye on the ball — which can be a lot of different things.
