Why Isn’t My Lyme Treatment Covered?

Lyme

About The Event

Did you know that nearly half of Lyme patients pay over $5,000 out of pocket for treatment—and most can’t even use insurance? This webinar will address one of the biggest issues in Lyme care: why patients can’t get the treatment they need. Leading voices in the field will examine critical issues like why insurance doesn’t cover all treatments, the legal and political landscape, and how we can fight for change together.

About The Presenters

Jenna Luché-Thayer is a former Senior Advisor to the U.S. Government and the United Nations with 35+ years of policy and grassroots experience in 45 countries, and has also worked with nonprofits and multinational corporations. Her expertise builds upon human rights to redress global inequities across the sectors of health, governance, the environment and education. Her achievements include shaping the World Health Organization’s ICD-11 codes to recognize life threatening complications from Lyme disease. Her international awards include International Women’s Day Award for Exemplary Dedication and Contributions to Improving the Political and Legal Status of Women (U.S. government) and Highest Ranking Technical Area in Accomplishment, Innovation and Comparative Advantage for the United Nations (UNCDF).

Dr Richard Horowitz is a founding member of ILADS, board-certified internist, and prior member of the HHS Tick-Borne Disease Working Group, and New York State Department of Health Tickborne Working Group. As medical director of the Hudson Valley Healing Arts Center, he has treated over 13,000 chronic Lyme patients with classical and integrative approaches, creating an effective model to address those with resistant chronic illness. His last book, How Can I Get Better? An Action Plan for Treating Resistant Lyme and Chronic Disease, explains his full classical and integrative approach to helping those with treatment resistant chronic illness. He is presently working on getting approved an NIH trial which will prove the efficacy of dapsone combination therapy and MSIDS variables for the treatment of CLD/PTLDS, and his new science book from Simon and Shuster will be released next year explaining how we can use what we learned from CLD in a broad range of other chronic illnesses.

Jenn Barrett earned a Juris Doctor degree from Seattle University School of Law and an MBA from the University of New Hampshire. During law school, she wrote a law journal note entitled: “It’s About Lyme: Why Congress Must Enact Medical Insurance Coverage Laws for Lyme Disease Patients Now.” Jenn was bitten by several ticks as a child and was eventually diagnosed with persistent Lyme, Bartonella, and Babesia after developing severe symptoms. You can follow her on Facebook and Instagram @JennBarrettTBD. She is not currently engaged in the private practice of law.

Jennifer Russell is the founder and executive director of Illinois Lyme Association (ILA). In 2012, her life took a profound turn when her 7-year-old daughter Lauryn became seriously ill with a mysterious set of symptoms. After numerous doctors and several misdiagnoses, Jennifer learned her daughter had late-stage Lyme disease. Fueled by her family’s journey to get an accurate diagnosis for Lauryn and the knowledge that many people face the same obstacles, Jennifer formed ILA with a mission to provide support, awareness, and education to individuals and families affected by Lyme disease throughout Illinois. Jennifer’s dedication and tireless efforts have resulted in a medical provider protection act, the creation of a Lyme disease task force, state-regulated insurance coverage for tick-borne diseases, a partnership with the Illinois Departments of Public Health and Natural Resources, and more.

About The Host

Sabbi Gale-Donnelly was diagnosed with Persistent Lyme Disease (PLD) in 2021 after a year of searching for answers and more than fifty medical visits. She has since worked on public health policy at the state and federal level, utilizing her ongoing experience as a patient to inform her work as a researcher and advocate. Sabbi is particularly passionate about the need to create spaces and avenues of treatment where patients can be truly heard. She is a proud member of ProjectLyme’s Emerging Leaders Board, and a rising Junior at Yale University, where she is studying Philosophy and Comparative Literature.

About The Sponsors

Project Lyme

Our mission is to eradicate the epidemic of tick-borne diseases through awareness and education, support of cutting-edge science, and advocacy for solutions to end the suffering. As a national Lyme disease non-profit, we aim to impact patients’ lives through our work.