HHS Tick-Borne Disease Working Group Begins Efforts Despite Controversies: Public Health Watch

Call it “tick bait” instead of “click bait.”

Even though the Tick-Borne Disease Working Group only held its first public meetings in Washington, DC on December 11-12, 2017, the new entity, which operates under the auspices of the US Department of Health and Human Services (HHS), has already generated plenty of eye-grabbing headlines.

Indeed, prior to the Working Group’s formation, the patient advocacy organization lymedisease.org launched a change.org petition seeking to have Gary P. Wormser, MD, chief, division of infectious diseases and vice chairman, department of medicine at New York Medical College, excluded as a potential member. At issue: Alleged conflicts of interest related to Dr. Wormser’s financial ties to manufacturers of diagnostics and pharmaceuticals used in the treatment of Lyme disease. As reported by the Huffington Post on December 11, the infectious disease specialist is among the defendants in a federal antitrust lawsuit, which alleges that he and other clinicians placed their financial interests ahead of those of their patients.

And, although Dr. Wormser reportedly declined an invitation to join the Working Group after more than 13,000 people signed lymedisease.org’s petition, the consortium has plenty of issues to tackle, namely, “chronic Lyme disease,” or “post-treatment Lyme disease syndrome,” according to the US Centers for Disease Control and Prevention (CDC).

The Working Group, which was formally established when Congress approved the 21st Century Cures Act in December 2016, and its 14 voting members are charged with “review[ing]… ongoing research and resulting advances [and] Federal epidemiological and research efforts… and [identifying]… research gaps,” according to its website. But just where the chronic form of the tick-borne disease fits within that remit—if at all—remains to be seen.

Even as more and more patients have complained of—and been diagnosed with—chronic Lyme disease, and their rights have become a major point of emphasis for organizations such as lymedisease.org, clinicians continue to debate whether it is a legitimate diagnosis. The guidelines for the treatment of Lyme disease published by the Infectious Disease Society of America (IDSA) in 2006 note that “there is no convincing biologic evidence for the existence of symptomatic chronic [Lyme disease]” and, as reported by Contagion^® in June, CDC have highlighted the risks associated with long-term antibiotic therapy for chronic Lyme disease. Indeed, in a peer exchange panel on Lyme disease hosted by Contagion^® in July, experts debated the existence of chronic Lyme disease—sometimes heatedly—coming only to the consensus that “some patients are experiencing something that goes on long after the initial infection, whatever that something is, and that needs to at least be acknowledged.”

And, it would seem, they are being acknowledged. Pointedly, for example, in its December 11 article, the Huffington Post reported that the CDC stopped linking to the IDSA guidelines as of December 1, 2017, indicating only that they were 11 years old and due for an update.

Remarkably, the Working Group steered clear of much of this controversy during its initial deliberations, which included public input as well as discussion on the formation of 6 subcommittees that will work toward the drafting of its report, due to be released at the end of 2018. But will these negative headlines ultimately cloud whatever comes out of their discussions?

“Signs of successes,” John N. Aucott, MD, Working Group Chair; Associate Professor, Division of Rheumatology, Johns Hopkins University School of Medicine; and Director, Johns Hopkins Lyme Disease Clinical Research Center, said at the meeting’s adjournment on Tuesday. “We worked together and got a lot accomplished.”

Here’s hoping that continues.

Brian P. Dunleavy is a medical writer and editor based in New York. His work has appeared in numerous healthcare-related publications. He is the former editor of Infectious Disease Special Edition.