Govt Agencies Deny Persistent Lyme at WG: Take Action Now!

ACTION Recommended by LDA:  Make Your Voices Heard on Persistent Lyme to the Working Group Now! June 24th Deadline.

• Submit Comments (verbal or written) for the next meeting by Wednesday, June 24th
• Next Meeting held online, Wednesday July 8th
• Register for the online meeting
• View Agenda

View Lyme controversy on videos below!

History of Working Group (WG) Formation:
The 21^st Century Cures Act, signed into law in 2016, called for the formation of a 14-member Tick-Borne Disease Working Group, to work under the auspices of the US Department of Health and Human Services (HHS). The panel would bring together representatives of various federal agencies, medical experts, scientists, and Lyme disease patient advocates. Together, they would strategize the best ways for the government to combat the huge public health threat posed by acute Lyme, persistent Lyme, symptoms, and other tick-borne diseases. Giving patients a voice in policy decisions that deeply affect them was an issue long championed by the Lyme community.

First Term of the Working Group – Success:
The Working Group was set up to last six years, reporting to Congress about its progress every two years. The first iteration of the panel, named in 2017, included three representatives of Lyme patients. The Working Group’s Report to Congress was submitted at the end of 2018, with generally good reviews from the Lyme community. It appeared progress was being made.

Current Term of the Working Group – Controversy:
Only one patient advocate chosen…. Things took a different turn in 2019, with the naming of the next panel. There was obfuscation, lack of transparency, and process irregularities from the very start. The Working Group’s membership wasn’t even publicly announced until less than a day before its first meeting on June 4. Only one patient advocate was chosen—LDA President Pat Smith. And, in a move that especially stuck in the craws of Lyme patients everywhere, the IDSA’s Dr. Eugene Shapiro was appointed as well.

Controversial IDSA doctor chosen for Working Group…. Dr. Shapiro is well-known for publicly mocking and belittling Lyme patients and their concerns, and for helping target the medical licenses of Lyme-treating doctors who don’t follow the IDSA’s Lyme guidelines, which he co-authored. He also has flagrant Lyme-related financial conflicts of interest that should have precluded him from serving on the Working Group according to the opinions of many people. (More than 38,000 people have signed a petition to remove Shapiro from the panel (see petition).  Despite many inquiries, there has been no official response from HHS regarding the petition.)

Co-Chair announces enough focus on Lyme, must focus on other tick-borne diseases…. Also at that opening meeting on June 4, newly appointed co-chair David Walker MD—who is an expert in rickettsial infections, not Lyme disease—made a startling announcement. He said that the prior Working Group had spent enough effort on Lyme disease, and he thought the new group should put its energies elsewhere. 

(Note:  According to the CDC, 82% of the cases of tick-borne infection in the US are Lyme disease. Shouldn’t it get 82% of the group’s attention? Furthermore, the first panel was aware there were still  many Lyme related issues to be further explored.)

Non-Attendee Votes by Proxy…. For example, at a two-day meeting in Philadelphia on March 3 and 4, Eugene Shapiro did not attend in person nor did he participate by telephone. However, when it came time to vote, Co-chair Walker cast votes on his behalf. Pat Smith questioned this and was basically told, “We checked. It’s allowed.” (Wait…what? Why have any debate at all if an absent panelist can pre-program his votes in advance?)

Agencies refuse to address persistent Lyme (Pat Smith strongly responds – see 2.5 min. video below)…. Also at that meeting, discussions edged closer to the controversial “elephant in the room”—the topic of persistent Lyme disease and the failure of US health agencies to adequately address it. Pat Smith pointed out that the CDC website only acknowledges acute Lyme disease. She said this leaves people who remain sick after beyond the early stages of the illness—along with their doctors—without any advice at all. In response, CDC spokesperson Ben Beard insisted, “The vast majority of Lyme disease patients are served quite well by the guidance we have on our website.” After representatives of several agencies echoed similar responses, here’s how Pat replied:

(Clip 2.5 min.)

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