Please read and sign the petition below to Bernie Sanders, who chairs the Senate Committee on Health, Education, Labor and Pensions (HELP Committee) as it calls for a public hearing to investigate the extent and impact of health inequities associated with persistent/chronic Lyme disease.

Request for Hearing to Investigate Health Inequities Related to Persistent/Chronic Lyme Disease
https://chng.it/JhJQZgP2KN

The petition will be submitted to Sanders and Ranking Member Bill Cassidy the 4th week of January 2024 via email and hardcopies delivered to their offices on Capitol Hill.

Below is background information and details on the editorial process.

The petition is a follow-up from the May 16, 2023 Capitol Hill briefing for health policy staffers on the Senate HELP Committee. Presenters included Holly Ahern, Bruce Fries, Mary Beth Pfeiffer, Isabel Rose and Monte Skall.

Our objectives were to educate Committee staff about the risks and impact of congenital and pediatric Lyme disease, discuss options for a public hearing in Spring 2024, and brief them on our legislative remedy, The Patient-Centered Performance and Results Act. We also wanted to establish a working relationship and obtain feedback and advice.

The health policy advisors we met with were receptive to our suggestion for a HELP Committee hearing on inequities related to persistent/chronic Lyme disease. They also agreed to provide feedback on our legislation after input from more stakeholder organizations was incorporated.

The petition mirrors the 2022 HHS Tick-Borne Disease Working Group Access to Care and Education Subcommittee report, which digs deep into the issue of health inequities related to persistent/chronic Lyme. It emphasizes inequities related to CDC and NIH reliance on unreliable serology tests and the surveillance case definition for Lyme.

It’s a collaborative effort with contributions from a diverse group of advocates and experts.

Dr. Elizabeth (Betty) Maloney, who co-chaired the TBDWG Access to Care subcommittee, and Dr. Joe Burrascano, the Dean of Senate hearings on Lyme, reviewed the letter and provided critical input that helped shape the final version. Microbiology professor Holly Ahern wrote the section on the impact of delayed diagnosis and helped with fact checking and editing. Several advocates provided input and helped with copy editing.

Please read, sign and share to help reach our goal of 10,000 supporters before the petition is delivered to Sanders and Ranking Member Cassidy.

Thanks,

Bruce Fries
President, Patient Centered Care Advocacy Group
Advisor for Research and Public Policy, Mothers Against Lyme