Introduction
Recently, I had the privilege of speaking at an Axios event in San Diego on “The Prognosis for America’s Pain Management.” It was an incredible opportunity to highlight the challenges in pain care and advocate for a future where people with lived experience (PWLE) are partners in shaping research, policy, and treatment decisions—not just passive recipients of care.
But 15 minutes goes by fast. There’s more I wanted to say, and more that needs to be heard. So here it is—what I intended to say about the current landscape of pain management, why the voices of people with pain matter, and how the future of pain care must evolve.
My Journey to Pain Advocacy
My journey into pain advocacy started with my own experience. I developed chronic pain 37 years ago after undergoing treatment for testicular cancer. Like many others, I found that the healthcare system wasn’t built to manage chronic pain effectively. There were few treatment options, and people with pain were often dismissed or misunderstood.
Over time, I realized that the real problem wasn’t just the lack of treatment but the lack of patient involvement in how pain care is designed and delivered. That realization turned me into an advocate—pushing for patient-centered care, better research, and policies that actually reflect the lived experiences of people with pain.
I am able to manage the pain I live with using a toolbox that contains many essential elements:
✔️ My faith
✔️ The love Marianne and I share
✔️ What I learned from the American Chronic Pain Association (ACPA)
✔️ What I learned from AppliedVR’s RelieVRx
✔️ Epidural treatments
Each of us defines our own toolbox—because pain management is personal. There is no single solution that works for everyone.
“People with pain are the experts in their own condition. Their voices need to shape the treatments they receive.”
The Challenges in Pain Management Today
Right now, chronic pain affects 1 in 4 adults in the U.S., yet we still don’t have a comprehensive, patient-centered approach to treatment. The biggest challenges include:
🔹 Fragmented Care: Chronic pain treatment is scattered across specialties, meaning people with pain get inconsistent recommendations and have to navigate the system alone.
🔹 Lack of Non-Opioid Alternatives: The response to the opioid crisis led to strict prescribing limits, but many people with pain were left without alternative treatments for their condition.
🔹 Outdated Insurance Models: Insurance often doesn’t cover effective non-drug therapies like physical therapy, acupuncture, or cognitive behavioral therapy (CBT), even though they are proven to help.
We’re essentially leaving millions of people suffering unnecessarily because our system isn’t designed to treat pain in a holistic, patient-centered way.
“Pain care today is often fragmented and outdated, leaving millions of people with chronic pain to suffer without real solutions.”
“The opioid crisis was necessary, but it went too far—people with pain were left behind, without the alternative care they needed.”
Defining “Patients” vs. “People With Lived Experience (PWLE)”
Words matter. The way we define people in healthcare can shape how they are treated, how they see themselves, and how their voices are heard.
- A “patient” is someone receiving medical care. The word is often associated with passivity—waiting for a doctor to diagnose and treat them.
- A “Person With Lived Experience (PWLE)” acknowledges that the individual is not defined by their condition but has firsthand knowledge of managing their health in daily life.
When we use PWLE, we emphasize that people living with pain are experts in their own experience and should be active participants in shaping healthcare policies, research, and treatment approaches.
“A patient is someone receiving care. A person with lived experience is someone who brings critical knowledge about how treatments and policies actually affect real lives.”
Patient-Centered Care: The Solution to These Challenges
🔹 It’s about respect. People with pain know their own condition better than anyone else. They deserve treatment that reflects their personal needs, preferences, and goals—not a one-size-fits-all model.
🔹 It’s about multimodal care. Effective treatment must combine medication (when appropriate), physical therapy, psychological support (CBT, mindfulness), movement-based therapy, and alternative treatments like neuromodulation or virtual reality (VR) therapy.
🔹 It’s about access. Evidence-based treatments should not be limited by insurance barriers or outdated policies that prevent people from getting the care they need.
“Patient-centered care puts the person, not just their condition, at the heart of healthcare. It ensures that treatment is tailored, collaborative, and empowering—because the best outcomes happen when people with pain have a voice in their care.”
The Future of Pain Management
The future of pain care must be patient-centered and driven by innovation. We are moving toward:
✔️ Tailored Treatments: Biomarker research will allow us to identify the biological mechanisms behind pain and customize treatments accordingly.
✔️ Non-Opioid Innovations: New medications like Suzetrigine, which targets pain-specific sodium channels, offer hope for opioid-free pain relief.
✔️ Breakthrough Therapies:
- Neuromodulation, which helps control pain signals in the nervous system.
- Virtual Reality (VR) Therapy, which helps retrain the brain’s pain perception.
- Cognitive Behavioral Therapy (CBT), which has been proven to help people reframe their pain experience and improve quality of life.
With initiatives like the NIH HEAL Initiative, we’re seeing people with pain and researchers working together to develop these new treatments—and that’s the key to making them effective and accessible.
“The future of chronic pain care is patient-centered, where treatments are personalized based on each individual’s unique pain experience.”
Final Thoughts & Call to Action
This is what I intended to say. And it’s what I will keep saying—until pain care truly puts people with pain first.
🗣 What do you think? Have you ever felt unheard in healthcare? What changes would you like to see in pain management? Let’s continue this conversation.
👉 If this resonates with you, please share, comment, and subscribe. Your voice matters, and together, we can push for real change.