On December 15, Health and Human Services Secretary Robert F. Kennedy Jr. convened a long‑awaited roundtable on Lyme disease.

The event brought together patients, clinicians, and researchers in Washington, D.C., while a national (and international) audience tuned in live via YouTube.

“For many years, this agency had a deliberate policy to refuse to engage with the Lyme community,” Kennedy acknowledged at the outset. He said he wants to change that. And his reasons are very personal.

As he explains in the following clip, many members of his family, including himself, have had Lyme disease, and one of his sons has dealt with chronic Lyme for years.

Kennedy went on to declare that the gaslighting of Lyme patients is now over.

Moderated by Secretary Kennedy, the roundtable featured Maine Senator Susan Collins, Virginia Congressman Morgan Griffith and New Jersey Congressman Chris Smith, alongside patients and medical experts.

Their discussions centered on the urgent need for better diagnostics, more coordinated care, and research that reflects the lived experiences of those affected.

Kennedy emphasized: “For decades, Americans suffering from Lyme disease have been denied the accurate diagnostics and meaningful care they deserve. Today’s actions push us decisively toward reliable testing and treatment grounded in the real‑world experiences of patients.”

The panelists

Among panelists that Lyme patients are most likely to be familiar with were Dr. Steve Phillips (co-author of the book Chronic); Dr. Robert Bransfield, a psychiatrist who has extensively studied how Lyme disease affects mental health; Dr. Linden Hu, former co-chair of the Tick-Borne Disease Working Group, and MIT researcher Michal Tal, who is conducting groundbreaking research on how Lyme disease affects women.

Patient representatives included Olivia Goodreau of the LivLyme Foundation and college student Sam Sofie, who discussed his personal experience with Lyme disease.

LymeX

One of the major announcements was the renewal of the LymeX Innovation Accelerator, a public‑private partnership with the Steven & Alexandra Cohen Foundation. Originally launched in 2020, LymeX is the largest initiative of its kind, designed to transform diagnostic testing for Lyme disease.

Kennedy also announced that HHS has a new web page devoted to Lyme disease: hhs.gov/lyme

What now?

Many worthwhile ideas were discussed at today’s event, centering around what the patient community desperately needs: better testing, better treatments, widespread recognition by the medical community of all manifestations of Lyme related symptoms; and insurance coverage for comprehensive Lyme care.

However, what remains unknown at this point is what happens next. Nobody’s going to fill these deep needs with the wave of a magic wand. It requires the political will to make it happen, appropriate infrastructure to carry out needed research, and adequate funding, for starters.

This wasn’t a bad way to begin a much-needed conversation. But it remains to be seen what if anything will come of it.

Watch the full roundtable here:

TOUCHED BY LYME is written by Dorothy Kupcha Leland, President of LymeDisease.org. She is co-author of Finding Resilience: A Teen’s Journey Through Lyme Disease and of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.