Historic Win: PANS Is Being Added to ICD-10

If you’ve spent any time in the PANS/PANDAS world, you know the frustration of a condition the medical coding system hasn’t formally recognized, leaving physicians without a standardized way to document it, researchers without a formalized way to track it, and families without a proper code when fighting insurance for treatment coverage. Today, we get to share news that changes that.

The CDC’s ICD-10 Coordination and Maintenance (C&M) Committee (the federal body responsible for the diagnosis codes used in every hospital, clinic, and insurance claim in the country) has approved an addendum so that, starting this fall, PANS (Pediatric Acute-onset Neuropsychiatric Syndrome) will finally have its own ICD-10 code, effective with the October 1, 2026 ICD-10-CM release. Until now, only PANDAS had a recognized ICD-10 code. That changes this fall.

This has been a long time coming, and PACE Foundation is proud to have spent the past year working directly with the C&M Committee to make it happen.

Why This Matters

For years, PANDAS, the streptococcus-triggered subset of PANS, has been listed in the ICD-10-CM system. But PANS itself, the broader umbrella condition that PANDAS falls under, was nowhere in the index. Clinicians trying to document a PANS diagnosis had to rely on symptom codes or unrelated “other specified” categories. None of it actually said “PANS.”

That gap wasn’t just an inconvenience. It had real consequences:

• Research invisibility. Public health agencies and researchers track disease prevalence, treatment outcomes, and funding priorities largely through coded medical records. If PANS has no code, it is not tracked in national health data, making it harder to study how many children are affected, which treatments work, and where research dollars should go. A code is the foundation for all of that.
• Diagnostic legitimacy. Being named in the ICD-10-CM is a quiet but powerful form of recognition. It signals to every doctor, hospital system, and medical school in the country that PANS is a real, distinct, trackable diagnosis rather than a catch-all or a controversy.
• Billing friction. Without a precise code, insurance claims for PANS-related care were harder to justify and easier to deny. Families already fighting for their children’s treatment shouldn’t also be fighting bad paperwork.

Adding PANS to ICD-10 addresses all three. Because PANS and PANDAS will now each have their own distinct, named entry in the coding system, physicians can document exactly which diagnosis a child has, giving researchers a better data infrastructure to measure and study PANS and PANDAS at a population level, and giving families a stronger foundation when navigating insurance.

How We Got Here

Getting a new code into the ICD-10-CM system isn’t quick. Proposals go through a formal review process with the C&M Committee, which meets twice a year to evaluate new and revised codes before they’re finalized through an HHS-level process. Over the past year, PACE Foundation worked alongside clinicians and researchers to build the case for this addition — presenting the clinical evidence, explaining the real-world impact of the coding gap, and pushing the proposal through each stage of review.

This is exactly the kind of behind-the-scenes advocacy work that doesn’t always make headlines, but quietly changes what’s possible for thousands of families. We’re grateful to everyone in this community who has shared their story, supported our advocacy work, and helped us make the case that PANS deserves to be named.

What This Means for Clinical Care

We asked Dr. Michael Daines, one of the leading expert clinicians and researchers at The University of Arizona’s CPAE Center of Excellence, to share his perspective on why this milestone matters:

“Having PANS formally recognized in ICD-10 is an important step forward. Diagnostic codes do more than support billing—they shape how conditions are recognized, taught, and treated across the healthcare system. With a standardized code, clinicians can document PANS consistently, making it easier to identify patients, follow outcomes over time, and ensure appropriate care. It also brings PANS into national health data systems, which is essential for tracking how common it is, understanding its impact, and building the evidence needed to improve treatment and awareness.”

What Happens Next

Beginning October 1, 2026, PANS will officially have its own place in the ICD-10-CM system. Both PANS and PANDAS will live under the same top-level code, D89.89, which also covers several other conditions. That might sound like they’d get lost in a crowded, generic bucket, but that’s not how it works: PANDAS already has its own separately named, individually trackable listing “D89.89 – PANDAS”, and this fall PANS will have it’s own individual listing “D89.89 – PANS.” In other words, sharing a top-level code doesn’t mean sharing an identity in the records. Just like the other conditions grouped under D89.89, PANS and PANDAS will each be documented, billed, and studied as their own distinct diagnoses. Clinicians will be able to use the appropriate named entry under D89.89 to accurately document a PANS diagnosis for the first time, and that data will begin flowing into medical records, claims systems, and research databases across the country with PANS tracked distinctly from PANDAS.

In the meantime, here’s what we’d recommend:

• Share this news with your child’s care team. The more physicians who are aware of and using D89.89 for PANS documentation, the richer the research data becomes from day one.
• Keep records of current denials or billing issues related to PANS care. These matter as we continue pushing for broader insurance reform.
• Stay subscribed to our newsletter so you don’t miss updates as the October release date approaches.

This is one more piece of the puzzle in getting PANS recognized the way it deserves: as a real, trackable, researchable diagnosis with a legitimate place in the medical record. It builds directly on the momentum from PANS joining the NIH’s rare disease registry, and it’s a sign of just how much can change when families, clinicians, and advocates keep showing up for this fight.

We’ll keep you posted as the October release date approaches. Thank you, as always, for being part of this community.

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Have questions about what this change means for your family’s care or your child’s medical records? Reach out to us at contact@pacefoundation4kids.org. We’re here to help.