Survival Shouldn’t Depend on a Zip Code
- maryrburrell
- May 20
- 3 min read
When Access Takes Everything You've Got—And Then Some
Nobody really talks about how hard it is to get access to care when you're already hanging on by a thread.
In 2020, I was fighting to stay alive after two years in hospice. My condition—severe tricuspid valve regurgitation—is often overlooked and under-treated, especially in women. At the time, there were very few FDA-approved treatment options for patients like me who weren’t eligible for open-heart surgery.
That’s when I heard whispers about a new clinical trial— testing a transcatheter valve replacement. It wasn’t a cure, but it was hope. No open chest. No bypass machine. Just a minimally invasive chance.
But that chance came with conditions.
The trial site wasn’t in my town. It wasn’t even in my state. The closest participating center was Oregon Health & Science University (OHSU) in Portland—over 250 miles away from my home in Bellingham, Washington. That meant hours on the road and in traffic driving through the entire state of Washington, hotel stays, appointment juggling, and a whole lot of planning.
And I couldn’t do it alone. I didn’t do it alone.
At the exact same time, my husband Louis was battling cancer for the first time. While he endured chemotherapy, it was our children—our adult son and daughter—who stepped in. They didn’t just help. They held it all together. My son drove Louis to treatment and doctor appointments. My daughter packed up the car not once, but three separate times, to get me to Portland for evaluation, screening, and eventually, implantation of the 52mm EVOQUE valve—the very first of its kind.
That valve didn’t just fix my heart. It changed the course of my life.
But here’s the truth most people never see: the system nearly failed me.
Because if I didn’t have family willing to move mountains, I wouldn’t be here telling this story. I would’ve been another patient deemed “too far.” Another one considered “too complex.” Another one silently disqualified—not because of her condition, but because of her circumstances.
That’s the ugly side of access in America. Clinical trials offer innovation, but only if you can physically get to them. Only if you have support. Only if you can afford the trip. For rural patients, disabled folks, low-income families, and people without a tight support network—that’s a mountain most can't climb.
💔 Access shouldn’t depend on your zip code, your stamina, or how many people you can lean on.
That’s why I speak up now—not just for me, but for the ones still waiting. The ones without a caregiver. The ones without transportation. The ones who’ve never even heard of these trials because their doctors haven’t mentioned them.
I’m one of the early patients who received EVOQUE—but more importantly, I’m living proof of what happens when access is possible.
And that’s exactly why I won’t stop talking about this. Because no one should have to fight this hard just to be considered. Because we all deserve to be seen. We all deserve a shot at life.
🔎 Did you know?
Tricuspid valve disease has been called the "forgotten valve" because of how often it's overlooked in treatment guidelines and clinical practice.
Less than 1% of all valve surgeries in the U.S. are for the tricuspid valve.
Most clinical trials require patients to travel to large academic centers, creating a major barrier for rural and underserved populations.
Research shows that caregiving during cancer treatment already takes a major emotional toll—but when a caregiver is managing multiple critically ill family members, the risk of burnout skyrockets.
📣 So here’s the call:
If you're a policymaker, researcher, hospital leader—or even just someone who gives a damn—ask yourself this:
Who’s being left behind?Because if access only works for the easy-to-reach, the healthy-enough, or the wealthy-enough—then it’s not access at all.
Let’s build a system where hope isn’t based on zip code.Let’s make it easier for patients to survive—and to thrive.Let’s make clinical trials accessible to the people who need them most.
How do we do that? We join forces. We speak up. We refuse to settle.
Because no one should have to fight this hard just to be considered.
Because we all deserve to be seen.
Because we all deserve a shot at life.
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