"A Long Way To Go": Patient Wants Better Listening From Pharma

A conversation with Rhonda Nelson, patient advocate, and member of the executive board of directors, Asthma & Allergy Network

Having dealt with aspirin exacerbated respiratory disease (AERD) for more than 20 years, Rhonda Nelson is no stranger to misdiagnoses, had a near-fatal struggle to find relief, and is on a constant journey to access proper support. It’s because of this that she’s become a patient advocate.

Though not a trial participant herself, as she’s never qualified due to the medications she takes or has taken, Rhonda has shared patient wants, needs, concerns, and more with just about anyone who will listen — really listen. She’s been on panels, spoken at conferences, and conferred with researchers to convey the patient experience.

And what has her experience talking with pharma companies been like?

“Pharmaceutical companies have a long way to go,” she says.

In this Q&A, Rhonda shares her experience as an AERD patient, discussing when she’s felt, when she’s been ignored, and how she thinks pharma companies can better integrate the patient voice to improve clinical trial design and execution.

As a patient with AERD, in what ways have you felt heard and, on the other hand, felt disregarded by your medical providers?

There have been moments when I’ve truly felt seen — when a doctor paused, looked me in the eyes, and listened not just to my symptoms but to my story. In those moments, I felt like a human being, not a case number. When someone validates your pain, your fear, and your questions, it brings a kind of peace that medicine alone can’t provide.

But then there have been other times. Times when I’ve walked out of an appointment feeling smaller than when I walked in. Times when my voice was dismissed, when my intuition about my own body was overlooked, or when I was rushed through like a checkbox on someone’s clipboard. Those moments cut deep because they remind you how easy it is to become invisible in a system that’s supposed to care for you.

Feeling heard shouldn’t be a rare gift — it should be the standard. And that’s why I keep speaking up. Not just for myself but for every woman who’s been silenced or sidelined in her own healing journey.

When you’ve felt unheard, why do you think that occurred?

When I’ve felt unheard, it’s often because the provider was more focused on the chart than the person sitting in front of them. There’s a disconnect that happens when systems prioritize efficiency over empathy. I get it — doctors are overwhelmed, appointments are short, and the pressure is high. But when a patient, especially one in pain or fear, walks into a room, they’re bringing more than just symptoms — they’re bringing their whole story. And when that story isn’t invited in, trust breaks down.

There’s also this unspoken hierarchy in healthcare that can make patients feel like they have to “earn” the right to be taken seriously. If you don’t fit the mold, or your labs don’t line up perfectly, it’s easy to get brushed off. And as women — especially women in midlife — we’re too often labeled as emotional, dramatic, or difficult when we’re just advocating for ourselves.

The biggest barrier, I think, is listening. Real listening. Not just hearing words, but taking them in with curiosity and care. Until that becomes the norm, patients will keep falling through the cracks. And that’s exactly why I’m committed to changing the way we’re treated — not just medically but humanely.

How have you been involved in patient advocacy for clinical research?

Advocacy, for me, isn’t just a passion — it’s personal. Living with AERD and walking through the medical maze firsthand lit a fire in me that I couldn’t ignore. I’ve sat in exam rooms with more questions than answers. I’ve faced treatments that felt like guessing games. And I’ve seen how critical research is — not just in labs but in lives.

As part of my work with the Asthma & Allergy Network, I’ve had the honor of bringing the patient voice directly to the table — where decisions are made, protocols are shaped, and studies are designed. I’ve participated in panels, spoken at conferences, and worked alongside researchers to ensure that real-life experiences are not just background noise but a guiding light. Because who’s better to inform clinical research than those of us living it every single day?

It’s not enough to be studied; we must be included. And that means patients talking to scientists, shaping the questions, not just answering them. I advocate for research that reflects the diversity, the complexity, and the humanity of the people it’s meant to serve. That’s how we move forward — together.

What is it like to find a trial and determine if it’s the right fit? What could pharmaceutical companies do to improve that patient experience?

The truth is, for most patients, finding a clinical trial can feel like trying to solve a puzzle without the picture on the box. It’s overwhelming. You’re already managing your condition, juggling appointments, medications, maybe even flare-ups — and now you’re supposed to decipher complex eligibility criteria and medical jargon just to see if you qualify? It’s a lot.

That’s why the Asthma & Allergy Network’s resources are so valuable. They break things down in a way that’s clear, compassionate, and human. They help people ask the right questions, understand the risks and benefits, and decide if a trial is truly aligned with their needs and goals — not just medically but personally.

But honestly? Pharmaceutical companies have a long way to go. If they truly want to improve the patient experience, they need to start with accessibility. Make the language simpler. Make the process smoother. Don’t bury patients in paperwork or make them feel like they’re jumping through hoops. And most importantly, build trust. Invite patients into the process early, listen to their fears and hopes, and design trials that respect their time, their lives, and their voices.

Clinical research doesn’t move forward without us. So, treat us like partners — not just participants.

What are the biggest changes you’ve seen with patient enrollment?

One of the biggest shifts I’ve seen is that clinical trials are finally starting to come to us, instead of expecting us to come to them. There’s been progress — more outreach, more digital platforms, and more efforts to diversify enrollment so it’s not just the same small group of people being studied. That’s a big deal, because real-world research needs real-world people from all walks of life.

Another huge change is the growing awareness that patients don’t just want to be in the trial — we want to understand it. We want transparency, plain language, and support at every step. People are asking smarter questions, advocating for themselves, and saying, “This is my body, my time — what does this mean for me?” That level of engagement is powerful.

But there’s still work to do. We need more culturally sensitive outreach. We need trial locations that aren’t just in big cities. And we need to keep knocking down the barriers — such as transportation, childcare, and time off work — that stop so many people from saying yes.

The more patients feel informed, respected, and truly part of the process, the better our research — and outcomes — will be.

Finally, what should pharma companies be asking or doing for patients but aren’t?

The biggest question pharma companies aren’t asking is this:

“What does it feel like to live this, day in and day out?”

Until you truly understand the emotional, physical, and even financial toll of chronic illness, you’re missing the heart of the story. It’s not just about treating symptoms; it’s about restoring lives. Pharma needs to ask:

What matters to you as a patient? What are your fears, your hopes, your priorities?

Another question they should be asking is:

“How can we make this easier on you?”

Not just “How can you fit into our study?” but “How can our study fit into your life?” Whether that’s flexible scheduling, transportation support, or even just a real human to talk to during the process — it all matters.

And here’s what they should be doing more of:

Building relationships. Showing up in communities, not just as brands but as partners. Listening, not in a focus group once a year but consistently. Including patients in trial design, feedback loops, and decisions that affect our care.

At the end of the day, we’re not just data points — we’re people. And if they want to make medicine for us, they need to build it with us.

About The Expert:

Rhonda Nelson, patient advocate, author, speaker, and philanthropist, is a beacon of resilience and strength. Her charitable work spans championing equitable access to affordable healthcare, supporting those diagnosed with AERD (Aspirin Exacerbated Respiratory Disease), serving as a voice in the foster care system, and encouraging women to reinvent themselves in their different stages of life.

Rhonda serves on the Executive Board of Directors with the Asthma & Allergy Network, impacts legislation, and speaks nationally, raising awareness for AERD. Having dealt with AERD for more than 20 years, she has experienced many misdiagnoses, a near-fatal struggle to find relief, a desperate search for answers, and a constant journey to access proper support. Rhonda and her husband Wayne, of the Little River Band, tirelessly devote their time and resources to helping others to navigate this challenging medical journey frequently associated with severe respiratory disease.