Less than 24 hours before the Tick-Borne Disease Working Group (TBDWG) holds its June 4 meeting, the Department of Health and Human Services (HHS) has finally named its selections for the newest incarnation of the panel.

Among the controversial choices is Dr. Eugene Shapiro. Within the last few weeks, more than 19,000 people have signed a petition to keep Shapiro off the working group, because he’s widely seen as working against the interests of Lyme patients.

After the first session of the TBDWG issued its report to Congress in late 2018, HHS solicited nominations for the second session of the group. At that time, officials said the panel would be named in April.

That month came and went, however, with no word about the new Working Group. Finally, on May 15, the Infectious Diseases Society of America announced on its website that Shapiro had been named to the group. In response to our inquiries, HHS said only that no decision had been made.

Finally, after close of business on the eve of the June 4 meeting, HHS announced its choices.

Other troubling choices

In addition to Shapiro, there are some other choices that the Lyme community may find troubling. New co-chairs of the panel are Dr. David Walker -and Leigh Ann Soltysiak.

Dr. Walker is an expert in rickettsial infections, not Lyme disease. Since 80% of tick-borne disease cases in the US are Lyme disease, many people feel that such an important position should be filled by someone whose expertise is Lyme disease.

Ms. Soltysiak has personal experience with Lyme disease. However, she served last time as the only patient representative on the vaccines subcommittee. Many Lyme patients expressed dismay that the subcommittee exhibited a unanimous pro-vaccine stance, with no committee members raising safety issues that are important to the Lyme community.

Here’s the announcement from HHS:

The U.S. Department of Health and Human Services announces today the appointment of new members to fill vacant positions on the Tick-Borne Disease Working Group (Working Group). These new members include five Special Government Employees and four Regular Government Employees (RGEs). The Working Group also announces six alternate RGE members, should the RGE members not be able to attend meetings.

The Working Group will hold its next public meeting on June 4, 2019, from 8:30 a.m. to 5:00 p.m. ET, at the Holiday Inn Washington-Capitol, 550 C Street S.W., Washington, D.C. Members of the public may attend the meeting in person or via webcast. For more information, visit the Working Group’s website here.

The Tick-Borne Disease Working Group was established on August 10, 2017, as required by the 21st Century Cures Act, to provide expertise and to review all efforts within the Department of Health and Human Services related to all tick-borne diseases, to examine research priorities and to help ensure interagency coordination and minimize overlap. The Working Group is required to submit a report to the HHS Secretary and Congress on their findings and any recommendations for the federal response to tick-borne disease every two years. It issued its first report in November 2018.

The Working Group will be chaired by David Hughes Walker, M.D., Professor of Pathology and Executive Director, University of Texas Medical Branch Center for Biodefense and Emerging Infectious Diseases; and Leigh Ann Soltysiak, Owner, Principal, Silverleaf Consulting, LLC.

The Working Group members are as follows:

SPECIAL GOVERNMENT EMPLOYEES (PUBLIC MEMBERS)

Leigh Ann Soltysiak* (Co-Chair): Owner, Principal, Silverleaf Consulting, LLC; Adjunct Professor, Entrepreneurship Thinking, Stevens Institute of Technology (New Providence, New Jersey). She brings a valuable perspective to the Working Group as a former Lyme disease patient who speaks honestly about the physical, financial and psychosocial issues caused by the disease. She was a valued member of the 2018 Working Group’s Vaccines/Therapeutics subcommittee.

David Hughes Walker, M.D.* (Co-Chair): Professor of Pathology, The Carnage and Martha Walls Distinguished University Chair in Tropical Diseases; and Executive Director, University of Texas Medical Branch Center for Biodefense and Emerging Infectious Diseases. (Galveston, Texas). His work currently focuses heavily on tick-borne diseases.   Dr. Walker brings with him significant experience with committee work, as the current chair of the Tick-Borne Disease Research Program’s Programmatic Panel, as well as past membership in seven federal advisory committees.

Scott Palmer Commins,*BS, M.D., Ph.D.: Associate Professor of Medicine & Pediatrics, University of North Carolina at Chapel Hill; Member, UNC Food Allergy Initiative, Thurston Research Center (Chapel Hill, North Carolina)

Sam T. Donta, M.D.*: Infectious Disease Consultant, Falmouth Hospital; and Former Member, U.S. Department of Defense Tick Borne Disease Research Programmatic Review Panel (Falmouth, Massachusetts)

Robert Sabatino: Founder and Executive Director, Lyme Society Inc. (Staten Island, New York)

Eugene David Shapiro*, M.D.: Professor of Pediatrics, Epidemiology, and Investigative Medicine, Yale University School of Medicine; Vice Chair for Research of the Department of Pediatrics; Co-Director of Education for the Yale Center for Clinical Investigation; and Deputy Director of Yale’s PhD Program in Investigative Medicine (New Haven, Connecticut)

Patricia V. Smith: President, Lyme Disease Association (Wall, New Jersey)

REGULAR GOVERNMENT EMPLOYEES (FEDERAL MEMBERS)

Charles Benjamin (Ben) Beard, Ph.D.: Deputy Director, Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention

Commander Rebecca Bunnell*, MPAS, PA-C: Senior Advisor, Learning and Diffusion Group, Innovation Center, Centers for Medicare and Medicaid Services

Angel M. Davey, Ph.D.*: Program Manager, Tick-Borne Disease Research Program, Congressionally Directed Medical Research Programs, U.S. Department of Defense

Dennis M. Dixon, Ph.D.: Chief, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases, National Institutes of Health

Captain Estella Jones, DVM: Deputy Director, Office of Counterterrorism and Emerging Threats, Food and Drug Administration

Leith Jason States, M.D.*, MPH (FMF): Deputy Chief Medical Officer, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services

Adalberto (Beto) Pérez de León*, M.D.: Director, Knipling-Bushland U.S. Livestock Insects Research Laboratory, Agricultural Research Service, U.S. Department of Agriculture

ALTERNATE REGULAR GOVERNMENT EMPLOYEES (FEDERAL MEMBERS)

Chien-Chung Chao*, Ph.D.: Research Chemist, Viral and Rickettsial Diseases Department Infectious Diseases Directorate, Naval Medical Research Center, U.S. Department of Defense

Captain Scott J. Cooper, MMSc, PA-C: Senior Technical Advisor and Lead Officer for Medicare Hospital Health and Safety Regulations, Centers for Medicare and Medicaid Services

Shahla Jilani, M.D.*: Deputy Chief Medical Officer, Office of the Assistant Secretary for Health, U.S. Department of Health and Human Services

David A. Leiby, Ph.D.: Chief, Product Review Branch, Division of Emerging & Transfusion-Transmitted Diseases, Office of Blood Research & Review, Center for Biologics Evaluation & Research, Food and Drug Administration

Commander Todd Myers, Ph.D.: Scientist, Office of the Chief Scientist, Office of Counter Terrorism and Emerging Threats, Food and Drug Administration

Samuel S. Perdue, Ph.D.: Section Chief, Basic Sciences and Program Officer, Rickettsial and Related Diseases, Bacteriology and Mycology Branch, National Institute of Allergy and Infectious Diseases), National Institutes of Health

Susanna N. Visser, Dr.PH,: Associate Director for Policy, Division of Vector-Borne Diseases, National Center for Emerging and Zoonotic Infectious Diseases, Centers for Disease Control and Prevention

* denotes new members

Click here to sign our petition to remove Dr. Eugene Shapiro from the Working Group.