A bi-partisan group of United States senators has sent a letter to Dr. Anthony Fauci, Director of the National Institute of Allergy and Infectious Diseases (NIAID), asking strong questions about the agency’s plans to combat Lyme disease.

The letter was signed by Senators Edward Markey (MA), Susan Collins (ME), Robert Menendez (NJ), Chris Van Hollen (MD), Elizabeth Warren (MA), Angus King (ME) and Richard Blumenthal (CT).

The four-page letter includes 12 specific questions, and asks Dr. Fauci to provide answers by January 11, 2020.

The questions are:

• What research is NIAID conducting or supporting to better understand the development, diagnosis and treatment of Lyme disease? Has research already conducted changed the way clinicians approach the diagnosis and treatment of Lyme disease? If so, in what ways?
• What research is NIAID conducting to better understand modes of transmission for Lyme disease? What research is the agency planning to conduct or incentivize to improve understanding of modes of transmission, including vertical transmission?
• What interdisciplinary efforts, if any, does NIAID support to help leverage scientific knowledge from other diseases, such as cancer, to better understand Lyme disease? Will the “Notice of Special Interest” support or encourage interdisciplinary scientific representation?
• We continue to hear from constituents experiencing persistent symptoms long after the recommended antibiotic treatment. What is NIAID’s current understanding of patient experiences with post-treatment Lyme disease syndrome or chronic Lyme? What research is the agency conducting to better understand the progression of these symptoms and how to treat them?
• What funding is currently being allocated for Lyme disease research and what is the projected increase based on NIH’s Strategic Plan for Tickborne Disease Research?
• Does NIAID think current resources are adequate to meet the challenges of Lyme disease? What other support would improve Lyme disease diagnostics and treatment?
• Will grant applications in response to the recently released “Notice of Special Interest: Advancing Research for Tickborne Diseases” be required to compete with all other disease grant applications, or will there be a special path of review and granting for Lyme disease?
• What is the long-term outlook and effectiveness of the current Lyme vaccines in clinical trials?
• How is NIAID developing an understanding of the entire landscape of Lyme diagnostic and therapy projects in the U.S. and worldwide? Would having a comprehensive understanding of the research landscape help to aid in fostering innovation?
• What specific actions, if any, is NIAID taking to help expand the pool of researchers interested in studying Lyme disease?
• What coordination, if any, exists with other federal agencies such as the Centers for Disease Control and Prevention and the Environmental Protection Agency to address the growing threat of Lyme disease? What coordination, if any, exists with private foundations to address the growing threat of Lyme disease?
• With regard to the priorities and goals laid out in NIH’s Strategic Plan for Tickborne Disease Research, does NIAID support the creation of clinical research “Centers of Excellence” as exist for other disease types?

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NIAID is part of the National Institutes of Health (NIH), which is in turn part of the US Department of Health and Human Services.

According to its website, NIAID’s mission is “Leading research to understand, treat, and prevent infectious, immunologic, and allergic diseases.”

The senators’ questions relate directly to that mission. The Lyme community eagerly awaits Dr. Fauci’s reply.

Click here to read the entire letter: Letter-to-NIAID-on-Lyme-Disease-12.19.19

TOUCHED BY LYME is written by Dorothy Kupcha Leland, LymeDisease.org’s VP and Director of Communications. She is co-author of When Your Child Has Lyme Disease: A Parent’s Survival Guide. Contact her at dleland@lymedisease.org.