Lyme Disease, Spirochetes

HHS Lyme Disease Roundtable: New Updates and What Patients Need to Know

by Jeremy Murphree

For decades, patients suffering from persistent symptoms of Lyme disease have felt invisible. Many have navigated a medical system that dismissed their pain as “psychosomatic” or told them they were cured after a short course of antibiotics—even as debilitating fatigue, neurological issues, and chronic pain remained.

In December 2025, a historic shift occurred. The U.S. Department of Health and Human Services (HHS) hosted the Lyme Disease Roundtable, bringing together federal officials, patient advocates, and medical experts. This meeting marked a definitive turning point in how the government views and funds chronic Lyme care.

“The Gaslighting is Over”

The most immediate takeaway from the roundtable was a dramatic change in tone from federal leadership. For years, the patient community has felt ignored by public health agencies.

At the event, HHS Secretary Robert F. Kennedy Jr. stated, “One of the reasons we wanted to host this meeting is to announce to the world that the gaslighting of Lyme patients is over.”

This sentiment was echoed by Congressman Chris Smith (R-N.J.), who noted that advocates used to “talk to the wall” in D.C. This official recognition that the disease can be life-altering sets a new baseline for how the government will interact with the Lyme community.

3 Major Actions Impacting Lyme Patients

The roundtable moved beyond speeches to announce three concrete policy changes designed to improve patient lives.

1. A New Terminology: Lyme-IACCI

IACCI Lyme Disease infographic

The HHS introduced a new term: Lyme-IACCI, which stands for Lyme Infection-Associated Chronic Conditions and Illnesses.

  • Why it matters: Historically, the medical community has been divided over the term “Chronic Lyme Disease.” By using Lyme-IACCI, the government creates a broad umbrella that acknowledges the chronic, disabling nature of the condition. This allows research to move past semantic arguments and focus on actual long-term symptoms like “brain fog” and joint pain.

2. Expanded Insurance and Billing Coverage

One of the biggest hurdles for patients is the high cost of out-of-pocket care. Dr. Mehmet Oz, Administrator of the Centers for Medicare & Medicaid Services (CMS), announced new guidance clarifying that beneficiaries with Lyme disease are now eligible for the Chronic Care Management (CCM) program.

  • Why it matters: This authorizes coordinated, personalized care planning under Medicare. When CMS recognizes a condition as “chronic,” private insurance companies often follow suit, potentially lowering the financial barrier for millions of patients.

3. Innovation in Testing (LymeX Renewal)

The HHS confirmed the renewal of the LymeX Innovation Accelerator, a $10 million public-private partnership with the Steven & Alexandra Cohen Foundation.

  • Why it matters: Current antibody tests often miss early or late-stage infections. LymeX is a prize competition designed to fast-track next-generation diagnostics that can detect active infection directly, which experts call a “game-changer” for accurate diagnosis.

The Science of Persistence: You Are Not Crazy

Persistent Lyme Disease

A major theme of the roundtable was acknowledging scientific uncertainty. For years, patients were told their symptoms were unrelated to Lyme after initial treatment. However, growing evidence—including studies on mice, dogs, and non-human primates—shows that Borrelia burgdorferi (the Lyme bacteria) can survive antibiotic attacks by hiding in biofilms.

This science validates the patient experience: if the bacteria can persist, then ongoing symptoms are likely the result of a persistent infection, not a psychological issue.

What The Lyme Disease Roundtable Means for Your Future

If you are a patient or caregiver, here is the bottom line on what these changes mean:

  • Official Validation: Your suffering is recognized at the highest levels of the U.S. government.
  • Better Care Access: New CMS codes mean easier access to long-term symptom management.
  • Faster Diagnostics: Increased funding for LymeX brings us closer to a test that actually works.
  • A Seat at the Table: Patients and advocates are now working alongside bureaucrats to shape policy.

Conclusion

The HHS Lyme Disease Roundtable represents a massive shift in the status quo. By launching the Lyme-IACCI initiative and updating insurance guidance, the era of ignoring chronic Lyme is ending. As the federal government begins “rowing in the same direction” as patients, there is finally a clear path toward better testing, better treatment, and a cure.

Disclaimer: This article provides a summary of government proceedings and scientific studies for informational purposes and does not constitute medical advice. Always consult with a healthcare provider regarding treatment options.