The federal Tick-Borne Disease Working Group recently submitted its third and final Report to Congress, marking the end of its six-year existence. In a minority response included in the 2022 report, Dr. Elizabeth Maloney—a staunch advocate for the Lyme community—takes issue with what she considers the Working Group’s “major failing.” Here’s what she wrote.

The Conclusion and Looking Forward chapter of the 2022 Tick-Borne Disease Working Group Report to Congress, which highlights many of the federal actions that have been taken in response to prior Working Group recommendations, makes no mention of the 2022 Working Group’s major failing—the decision by the majority to not recommend renewing the Tick-Borne Disease Working Group, which by statute, sunsets in December of 2022. The purpose of this minority report is to demonstrate why that decision is in error and to suggest a way forward.

Generally speaking, federal advisory committees (FACs) serve two important purposes, to provide information and advice that would not otherwise be available through sources internal to the federal government and to provide an opportunity for the public to directly participate in this process (GSA, 2019).

The structure of the Working Group created opportunities for success on both fronts. During its six-year existence, the Working Group drew not only on the expertise of its appointed members, but also on the multitude of subject matter experts, including those from the patient community, who served on 19 of the 21 different subcommittees.

The broad spectrum of scientific perspectives and the inclusion of patients and patient representatives allowed for vigorous and respectful debates on highly contentious topics that (a) identified and prioritized gaps in the federal response to the threats posed by tick-borne diseases and conditions, (b) proposed innovative strategies aimed at preventing, diagnosing, and effectively treating them, and (c) fostered relationship building between federal and public members. The benefits of employing this collaborative approach are reflected in the recommendations generated by the 2018, 2020, and 2022 Working Group members.

How to proceed?

Progress on implementing these recommendations has been slow and uneven. While Working Group members agreed on the need to transition from identifying and addressing gaps toward implementing the recommendations that have already been made, there was disagreement as to how to proceed.

Although there was widespread support  at the April 27-28, 2022, meeting for a single FAC that included multiple components, an official vote on the matter was tabled so that a smaller group could work out the details of the recommendation (HHS, 2022).

In the months that followed, the federal members’ support for the FAC recommendation evaporated, and the FAC recommendation put forth by that smaller group at the October 4 5, 2022, meeting did not pass.

The majority, which included all of the federal members, erroneously maintained that because implementation is operational in nature, it is strictly within the purview of the federal government. Many expressed the belief that renewing the Working Group would place an undue burden, both in time and money, on the agencies. The majority appeared to believe that listening sessions and public workshops will be sufficient means for continuing public engagement.

The benefit of equal footing

Those who supported renewing the Working Group respectfully disagree. We recognize that many of the gains the Working Group achieved were largely attributable to its unique ability to bring together disparate perspectives on equal footing. Among the many tick-borne diseases, Lyme disease has been an especially contentious topic for decades (Access to Care Services and Support to Patients Subcommittee, 2018; Maloney, 2016; Tonks, 2007).

In their oral and written testimony to the Working Group as well as in a recently circulated petition to members of this Working Group, the Lyme disease community related how the voices of patients, clinicians, and researchers who challenge prevailing scientific and medical practices, particularly with regard to patients who remain ill after antibiotic treatment, have been systematically marginalized and/or silenced. As described in Chapter 3, Access to Care and Education, these types of structural barriers contribute to the health disparities that plague this patient population.

Other groups within the broader tick-borne disease landscape were also beneficiaries of the Working Group structure. The considerable exposure that the Alpha-gal Syndrome community gained during the first cycle earned it well-deserved attention within all three reports, and in 2022 an entire subcommittee report was devoted to this important medical topic.

For many within the tick-borne disease community, the equality afforded to them by the Working Group structure and processes and the efforts at building consensus were laudable departures from the past. The community response to this successful forum has been to lobby for more tick-borne disease funding for NIH and CDC, and funding for these agencies has increased significantly as a result of these efforts. Discontinuing this forum may adversely affect future patient lobbying efforts as, from their perspective, listening sessions and informational exchanges represent a step backwards, not forwards.

There’s more work to do

The work needed to achieve health equity for patients with tick-borne illnesses and associated illnesses is far from complete. Given that FACs are routinely renewed when their work is unfinished, it is a mistake for the majority to abandon this successful approach for engaging patients and soliciting input from a wide range of subject matter experts.

Rather, the Working Group should be renewed under a new charter that pivots to building on the work that has already been done. Implementation of Working Group recommendations would benefit from the experiences and knowledge of outside experts and the affected patient groups. This “slimmed down” version of the Working Group would retain the critically important elements discussed above while reducing the financial and time commitments that were concerns to some federal members.

Continuing public participation and federal transparency regarding federal tick-borne disease activities will increase the tick-borne disease community’s confidence that their needs and concerns are appropriately assessed and addressed.

Recognizing that the vote on the recommendation to continue the Working Group will not be reconsidered, the future of the Tick-Borne Disease Working Group rests in the hands of the tick-borne disease community and their elected representatives. Patients, clinicians, and researchers who want the Working Group to continue should contact their federal representatives and urge them to pass legislation to reinstate the Working Group so that it can continue the work it so ably started.

Dr. Elizabeth Maloney is President of Partnership for Tick-borne Diseases Education, a 501(c) that provides educational resources to medical professionals and the public. She is also the Education Co-Director at Invisible International, and has authored several peer-reviewed papers and treatment guidelines on Lyme disease. She served on the TBDWG from 2021-2022.

See also: Final TBD Working Group report reflects patient contributions

Click here to read the entire report.