IDSA Letter To Federal Tick Borne Disease Working Group

Regarding Their First Report

November 2018

Link To IDSA Letter

https://www.idsociety.org/globalassets/idsa/policy--advocacy/current_topics_and_issues/emerging_infections_and_biothreats/agency-efforts/112618-idsa-comments-on-tickborne-disease-w orking-group-report.pdf

QUOTE- “… we are extremely concerned that the non-evidenced based approach favored by the Working Group has produced a report containing irresponsible recommendations that run counter to quality scientific and clinical information. If implemented, these would cause significant harm to patients and public health."

QUOTE- "... there is not a pressing need for additional federally supported research on antibiotic treatment for Lyme disease."

QUOTE- "There is clear, widely accepted scientific evidence indicating that a 10-28 day course of antibiotics, depending on the stage of Lyme disease, will kill the Lyme disease bacterium in humans in all but the rarest of cases."

QUOTE- "... however, patients are often subject to multiple additional courses of antibiotic that are of unclear worth."

QUOTE- "It is essential that research on tick-borne diseases meet established standards for scientific rigor to ensure that study results are meaningful and can safely and effectively guide patient care.

Attempts to make clinical trials more inclusive or pragmatic must not override the need to ensure that enrolled patients have Lyme disease based on widely accepted standards."

QUOTE- "IDSA has grave concerns about the content in the Access to Care chapter.

If the recommendations were implemented as written, they would essentially remove any accountability for physicians providing unproven treatments to patients who may or may not have Lyme disease.

These treatments can be harmful, and the recommendations in this chapter would remove patients’ opportunity for redress and prohibit state medical boards from censuring these doctors or preventing them from harming additional patients."

QUOTE- " While IDSA supports creating a federal repository of information on Lyme and other tick-borne diseases, it is critical that all of the information be evidence-based to ensure patients receive the highest level of care possible.

Increased federal funding for responses to tick-borne diseases is vital, but this funding cannot come at the expense of funding for other diseases, including HIV."

QUOTE- "The recommendations and policies outlined in this chapter would subject patients to faulty diagnostic procedures and dangerous, unproven treatments.

We also oppose recommendations or laws designed to protect clinicians who provide harmful treatments.

In addition, we oppose any attempts by the Working Group to undermine widely accepted medical guidelines for the treatment of Lyme disease that are rooted in scientific evidence or to promote clinical guidelines that are not evidence-based.

We are apprehensive about the potential impact of the recommendation to provide protections for doctors who follow “recognized guidelines.”

The term is exceedingly broad and could easily be applied to guideline recommendations that lack sufficient evidence or are based mainly on patient preference such as the ILADS guidelines that give physicians broad latitude regardless of documented efficacy or safety.

This recommendation was adopted by a margin of only one vote, by far the most contentious vote of the Working Group, yet due to the composition of the writing group, the report will contain no minority opinion on this issue.

This is a highly significant oversight and defect. Broad protection for physicians who subject patients to substandard or even dangerous therapies will likely increase the number of patients who are harmed."