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In Conversation With… Kathy Perez

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“When patients can track their own experience of steroid‑toxicity and take that data straight into the clinic, they stop being passive recipients and start driving the conversation.”

 

Clinicians know that long‑term steroids save lives, yet the collateral damage is crushing quality of life and inflating healthcare costs. Few people understand that better than Kathy Perez, Founder of KP Advocacy and Policy and former Vice President of Global Patient Advocacy and Policy at Argenx.

 

Perez’s 40‑year pharma career spans sales leadership, healthcare compliance, and more than 25 product launches across rare diseases and oncology. But a second‑career pivot into advocacy proved decisive:

 

“Show up early and stay late, engage patients before the first protocol draft and still be there when the real‑world evidence rolls in.”

 

That philosophy has shaped her work with patient organizations worldwide, ensuring studies answer questions that matter in the living room as well as the boardroom.

 

What “good” advocacy looks like

Asked why she left commercial roles for advocacy, Perez is blunt:

 

"Drug development without the patient voice is guessing what the patients need and want. When patient communities understand the science, they know when and how to advocate for themselves.”

 

Her checklist for meaningful engagement is simple:

  • Mutual benefit – projects co‑designed to advance both science and patient objectives
  • Reputation‑building – consistent delivery of promises so communities invite you back

Steroid‑toxicity under the spotlight

Perez’s collaboration with Steritas began with a shared determination to quantify the hidden burden of chronic steroids by gaining insights from patients:

 

“I’ve met young mothers who can’t lift their children because years of daily steroids have left them osteoporotic, and they’re still adrenal‑insufficient, trapped on the drug forever.

 

Patients tell me: If I could get off steroids, it would be worth the world to me. Those stories push us to find targeted therapies and to give people tools like Sam so they’re not flying blind while we wait.”

 

By capturing real-world data using tools like Sam (steroidsandme.com) and feeding anonymized datasets back to researchers, Perez argues, patients become partners in dismantling outdated prescribing habits.

 

KP Advocacy and Policy: What’s next

Stepping out on her own, Perez is packaging three capabilities that biotechs rarely find in one place:

 

  • Commercial acumen; end‑to‑end launch insight from protocol to reimbursement
  • Compliance‑savvy creativity; collaborative projects that stay well inside global rules
  • Relentless execution; “rolling up your sleeves” to translate strategy into published evidence

 

“It’s time to move beyond transactional outreach. I want companies to be invited into communities because they’re trusted collaborators.”

 

If you believe patients deserve a louder voice, she’s ready to help companies “show up early and stay late.”