Patients Should *NOT* Have To Write Policy Briefs

Sally Neely Nix lives with multiple autoimmune diseases and chronic pain that would send most people to the ER. She manages it with nerve block injections. Minimally invasive. Relatively cheap. Months of relief. No opioids.

Her insurance company calls them "experimental."

So she did what patients with complex disease are forced to do. She gathered the medical literature. Compiled the evidence. Built an executive policy brief. Sent it directly to the CEO and Medical Director of Blue Cross Blue Shield of North Carolina.

She did all of this while in extreme pain.

At a time when the system is desperate to reduce opioid dependence, insurers are blocking the treatments that actually help patients avoid opioids. Then they hide behind the word "investigational" like it means something other than "we don't want to pay."

Patients become researchers. Policy advocates. Medical translators. Negotiators. All while trying to survive inside bodies that demand extraordinary resilience.

This is the system working exactly as designed.

Read Sally's full piece below.

Welcome to 2026: The Year of the Patient where the sick shall inherit the ballot. See the Year of the Patient collection and join the movement

If this hits home, drop your horror story in the comments and tell me where you have seen it happen. How about a rage repost? Or tag a former colleague just for fun. Every impression pushes this in front of more people who deal with the same mess.

Are you new here? My condolences and my thanks. Follow along and stay loud with the rest of us. More voices means more pressure on a system that counts on silence


SOURCE  ➡️ https://substack.com/home/post/p-190539824

Matthew Zachary

Matthew Zachary has spent three decades fighting to make the American healthcare system less cruel, organizing millions through advocacy and media. A former concert pianist whose life was turned upside down by brain cancer at just 21, he founded Stupid Cancer, the largest nonprofit for young adults with cancer. He also launched The Stupid Cancer Show, widely regarded as the first healthcare podcast, which later evolved into the award-winning Out of Patients. He produced Cancer Mavericks, a documentary series about the rebel patients who changed modern oncology. He is CEO and Co-Founder of We The Patients, a national movement organizing patients into collective civic power, and the author of We the Patients: Understanding, Navigating, and Surviving America’s Healthcare Nightmare (Wiley, May 2026) with Jen Singer.

https://www.matthewzachary.com
Previous
Previous

Tamika Felder Built Cervivor. Then She Built a Family.

Next
Next

Yes, I Partnered With a Skincare Company. Here Is Why.