How Patient Voices Are Celebrated, Borrowed, and Denied Power

This is not a fluff piece, and people, especially Big Pharma and major organizations, may be offended by this article. Let’s be clear: usually, I use humor, charisma, and grace to articulate my frustration. My training in pageantry has taught me how to smile through my disappointment. I know how to soften hard truths so they are easier to hear. But after being chewed up and spit out by companies and organizations that claim to mean well, I have reached a point where honesty matters more than being palatable.

When it comes to health advocacy, I am no longer willing to mince my words

As a woman of faith, I have always believed that pain can birth purpose. I have lived that belief. I have seen suffering transformed into service and wounds transformed into wisdom. But what happens when the very pain that shaped your purpose becomes a product for someone else’s platform, paycheck, or prestige?

This is where advocacy begins to cross the line into exploitation.

As I mentioned before, I am a woman of faith. As such, I am an avid churchgoer. The church has often received criticism for overworking and under-appreciating its volunteers. People give their time, their labor, their gifts, and their loyalty, and sometimes receive nothing more than a church dinner in return. Yet these volunteers are the heartbeat of the church. They are the ones who keep things moving often without recognition or meaningful support.

In many ways, I see that same pattern in patient advocacy

For years, patients in the advocacy space have shared our stories, our struggles, our ideas, and solutions. We have sat on panels, participated in lunch and learns, joined advisory boards, showed up for awareness campaigns, participated in interviews, and even created marketing strategies for Big Pharma and major organizations. We not only share our insight, we continue to open emotional wounds in the name of helping others. We offer the kind of wisdom that cannot be taught in a boardroom because it was learned in hospital beds, emergency rooms, sleepless nights, and financial hardship.

All the while, Big Pharma and major organizations have been lurking in the background, notebook in hand, listening closely to every pain point, every unmet need, every idea. They take our lived experience back to their marketing departments, collaborators, and repackage what we shared as innovation. There are many pharmaceutical patient advocacy representatives who earn highly competitive salaries. Others may receive generous perks, sophisticated office environments, and professional recognition for “serving” the patient community.

Yet so many of the ideas driving their work come directly from patients who are financially strained, medically vulnerable, underemployed, denied disability support, and still fighting to access basic care.

Patients are the face of their campaigns and the backbone of their messaging. Our stories help them secure funding, shape programs, build trust and humanize their brands. In many ways, patients are the bread and butter of their success. Our pain fuels the machine, yet we are excluded from the real power behind our stories.

That is not advocacy, that is extraction

Too often, patient-centered work is really discussed as patient-facing performance. They want our images, our quotes, our tears, our resilience, and our testimonies. And somewhere in the background, you can almost hear someone telling Siri or Alexa to play “In the Arms of an Angel” by Sarah McLachlan while they build a campaign around our pain.

If organizations truly value patient voices, then prove it! Pay patients as consultants, not as tokens. Hire them into leadership, not just storytelling roles. Build with us, not around us. Stop using our pain as a strategy while leaving us to carry the consequences alone.

Because when patient insight is used to generate institutional power, corporate gain, or public praise without fair return, it is no longer advocacy.

It is exploitation.

This article is only the beginning. It is the first in a series where I will be unpacking the uncomfortable truth about what exploitation can look like in patient advocacy spaces. I will discuss how often it hides behind polished language and good intentions, how organizations smell out desperation to provide for our families, and how patient advocates pit patient advocates against each other. We will also explore what real advocacy should look like and what patients should be able to require from the institutions that claim to serve them.

If you are a patient, caregiver, or advocate who has experienced this tension for yourself, I invite you to share your story in the comments. Have you ever felt like your story, labor, or pain was used more than it was honored?

You are not required to tell every little detail, but your voice matters. And perhaps the more honest we become, the harder it will be for these patterns to remain hidden.