W hen the first phase of the federal Tick-borne Disease Working Group ended in December 2018, many in the Lyme community were hopeful. The TBDWG, established via the 21st Century Cures Act, had been envisioned as a means of bringing together different viewpoints regarding Lyme and other tick-borne diseases. The Lyme community had advocated for creation of the panel in order to give Lyme patients, their treating doctors, and researchers toiling on their behalf a voice in government policy regarding the escalating risk of Lyme disease and other tick-borne diseases.
Although Lyme advocates might not agree with everything the panel said or did, overall, things seemed to be going in a positive direction. The TBDWG held eight meetings in 2017–2018 and covered a lot of ground. Seven subcommittees researched different topics and made recommendations. The Working Group discussed those ideas and included many of them in its 2018 Report to Congress, laying the groundwork for future action.
The Department of Health and Human Services (HHS) set up the Working Group as follows. There would be three iterations of the panel, seated in 2017, 2019, and 2021, respectively. Each session would culminate in a report to Congress. The group would consist of seven “federal” members, chosen from government agencies, and seven “public” members, representing patients, clinicians, and researchers. The panel would also set up subcommittees to help them, made up of experts, advocates, and patients.
As the Working Group’s first term came to a close, the Department of Health and Human Services solicited nominations for new public members. They were to start in 2019, working toward publication of a 2020 Report to Congress.
LymeDisease.org nominated a number of people who we thought could bring new blood to the Working Group and represent the community well. (None of the new people we put forth were selected.) We were told the members would be announced in April 2019. Alas, April came and went with no word from HHS about the TBDWG. The first “news” about appointments came on May 15, 2019, when the Infectious Diseases Society of America (IDSA) announced that one of its members, Dr. Eugene Shapiro, had been named to the Working Group.
When we asked for confirmation from TBDWG staff, they told us that no decision about group membership had yet been made. This answer strained credulity. With no official word on the subject, why did the IDSA feel sure enough to post Shapiro’s appointment on its website? Were they privy to inside information? And if untrue, why wouldn’t HHS ask the IDSA to delete that posting?
The possibility that Shapiro would be put on the Working Group horrified the Lyme community. To help capture people’s strong emotions on this issue, LymeDisease.org started a Change.org petition.
Petition Announcement – Shapiro Is Not An Acceptable TBDWG Member
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