The information and opinions addressed below concerning the Tick-Borne Disease Working Group are of the individual and do not necessarily reflect the opinions of the Working Group, the U.S. Department of Health and Human Services, or any other component of the Federal Government.
On August 26, the U.S. Department of Health and Human Services unveiled its new members for the 2021-2022 Tick-Borne Disease Working Group (TBDWG). The group is chaired by Holiday Goodreau, Executive Director of the LivLyme Foundation, and Dr. Linden Hu, Professor of Microbiology and Medicine at Tufts University. Eleven other members sit on the panel, with five functioning as public representatives, and seven working on behalf of the Federal Government.
Public representatives include:
Jennifer Platt, Ph.D., of Tick-borne Conditions United
Elizabeth Maloney, M.D., of the Partnership for Tick-borne Diseases Education
Monica Embers, Ph.D., of the Tulane National Primate Research Center
Kirby C. Stafford III, Ph.D., of the Connecticut Agricultural Experiment Station
Sunil K. Sood, M.D., a pediatric infectious disease specialist.
Government representatives include:
Charles Benjamin (Ben) Beard, Ph.D., Centers for Disease Control and Prevention
Captain Rebecca Bunnell, MPAS, PA-C, Centers for Medicare and Medicaid Services
Dennis M. Dixon, Ph.D., National Institutes of Health
Robert J. Miller, Ph.D., U.S. Department of Agriculture
CDR Todd Myers Ph.D., U.S. Food and Drug Administration
Leith Jason States, M.D., MPH, Office of the Assistant Secretary for Health
Gabriella Zollner (Romero), Ph.D., U.S. Department of Defense
To inform the work of the TBDWG, each member will serve on a subcommittee, which identifies priorities and develops reports, describing current efforts, gaps in research, and potential actions relevant to their topic. To learn more about the current subcommittees, click here.
Expectations for the 2021-2022 Session
Focused on laying the groundwork for the future of tick-borne disease research and patient care, the TBDWG has met twice previously, once in 2020, and originally in 2018. For the 2021-2022 session, the expectation seems consistent that they are not going to “reinvent the wheel.” In order to maximize outcomes, the panel plans to leverage recommendations made by previous TBDWGs, expanding on them by adding new information and presenting everything together to show a clear picture of issues and solutions.
I had the pleasure of interviewing the newly appointed Co-Chairs to get their individual opinions on what to expect from the final session of this important Federal Working Group. As you will hear reiterated in Holiday’s video, remember that none of these opinions reflect those of the Working Group, the U.S. Department of Health and Human Services, or any other component of the Federal Government.
At the end of the day, everyone can come together to say we need better science… and what we really need is more funding.
Holiday Goodreau
Interview with Holiday Goodreau
As Executive Director of the LivLyme Foundation and co-chair of the TBDWG, Holiday Goodreau is in a unique position to effectively communicate the wants and needs of patients directly to the Federal government. Having previously served on the Access to Care Services and Support to Patients Subcommittee during the 2018 TBDWG session, she understands her role as a group member intimately.
Describing her focus for the upcoming session, Holiday reiterates well-known issues in the patient community, including suspect testing, inadequate therapeutic remedies, a lack of physician and public education, as well as the need for tick mitigation as populations increase. “We are trying to give a very direct, very concise roadmap to Congress,” Goodreau said, elaborating that simplifying the issues will give the group the highest chance of success.
“At the end of the day, everyone can come together to say we need better science… and what we really need is more funding,” Goodreau explained. Funding increases allow for additional opportunities to create better diagnostics, therapeutics, and preventive measures for tick-borne diseases.
After the interview, Holiday and I discussed ways for patients to get involved. She suggested reaching out to your representatives encouraging them to read the 2018 or 2020 TBDWG report to be prepared for the 2022 report. Educating members of Congress is the best way to make a direct impact because they are the ones who actually appropriate money. To find out who your representatives are, enter your address here.
To watch Holiday’s full interview, you can view the Youtube video below:
The goal is to be able to give Congress a clear roadmap of how to tackle tick-borne diseases.
Dr. Linden Hu
Interview with Linden Hu
While I did not get a chance to record an interview with Dr. Linden Hu, he graciously took the time to answer our burning questions about his role with the TBDWG. Strongly reiterating the need to build on work done by past committees, his main goal for the 2021 session was clarity. Hu said, “I hope that we can come to a strong consensus about the gaps in the field and where we need to make progress. The goal is to be able to give Congress a clear roadmap of how to tackle tick-borne diseases.” He hopes that years from now, he will be able to look back on his time serving to see “improved care and outcomes for patients and a decrease in any number of tick-borne diseases.”
Serving as one of the scientific representatives, Hu was surprised about how much being in the group has already influenced his thought process on research. When asked how his experience would translate into his new role, Hu stated, “Honestly, it might even be the other way around. As we get later in our careers, we start to think about how we might really make an impact on patient lives. Being on this committee with so many other smart people, I am already feeling like it is helping to focus my thinking about what I want to do with my research.” Currently working on projects with Kim Lewis on the development of narrow-spectrum antibiotics to eradicate the disease in the wild, and Klemen Strle to help understand why patients have such different outcomes with infection by looking at the intersection of host and bacterial genetics, Hu is obviously committed to bettering patient outcomes and helping the world have a clearer picture of these still misunderstood diseases.
Hu also recognizes that regardless of his professional background, he operates with implicit biases. He said that “although as scientists, we feel like science is bias-proof, it really isn’t. I think we all need to recognize when we may have bias and to be extra certain we keep an open mind and fairly examine the data around areas where there is likely to be bias.”
Call for Public Comment
The TBDWG has been a catalyst for change at the federal level for the past several years. While progress has been made, there is still much more to do in order for patients to receive the best care available and for scientists to have funds available to make an impact through research.
TBDWG is currently accepting public comments from any stakeholders impacted by tick-borne diseases. To provide input, feedback, or suggestions, reach out to tickbornedisease@hhs.gov.
