Advocate asks IDSA to remove false statement about Lyme transmission
On May 12, 2021, Lyme advocate Bruce Fries sent the following letter to Dr. Barbara Alexander, President of the Infectious Diseases Society of America.
Dear Dr. Alexander, I am writing to request that IDSA remove an inaccurate statement about the transmission of Lyme disease from the IDSA website on the page Ten Facts You Should Know About Lyme Disease.
The following statement, which is number one on the list, is clearly false. “Lyme disease is caused by bacteria called Borrelia burgdorferi that is ONLY transmitted to humans when they are bitten by an infected tick.”
It is well documented that Borrelia burgdorferi can cross the placenta, both infecting and causing harm to unborn children. CDC acknowledges this mode of transmission in the publication Pregnancy and Lyme Disease.
NIH acknowledges this in its publication Lyme Disease: The Facts, The Challenge.
The big unknowns are the incidence of vertical transmission, the frequency of adverse birth outcomes, and links between congenital Lyme and developmental disorders.
Below is a link to a review of the scientific literature that documents maternal-fetal transmission of Lyme disease. It includes a list of the types of research needed to address this neglected aspect of Lyme disease.
In addition to being false, the IDSA statement that Lyme is only transmitted by ticks has the potential to harm patients by contributing to misdiagnosis of children who have been congenitally infected.
Researchers who rely on the IDSA for information may be less likely to submit grant applications for this much-needed research if they read this statement that implies that alternate modes of transmission do not exist.
NIH has issued a series of notices to encourage investigators to apply for grants and has asked stakeholder organizations for help getting the word out. More than $29 million in new funding is available that could support this type of research.
NIAID Director Anthony Fauci has also called for research on vertical transmission of Lyme disease and has acknowledged that Lyme disease can be passed from mother to fetus and lead to adverse birth outcomes.
To correct IDSA’s inaccurate claim that Lyme can be only transmitted by ticks, I suggest the sentence in question be replaced with the following: “Lyme disease is caused by bacteria called Borrelia burgdorferi that is primarily transmitted to humans when they are bitten by an infected tick. Research has also shown that Lyme bacteria can cross the placenta, both infecting and causing harm to unborn children. More research is needed to better understand the extent of this mode of transmission.”
In addition to making this correction in a timely manner, I encourage IDSA to take this a step further and help get the word out that research is needed to better understand the impact of Lyme disease on pregnant women and their offspring.
This is an excellent opportunity for IDSA to show leadership and help advance research that will improve diagnosis and treatment of Lyme disease in pregnant women and their offspring and reduce the harm and suffering from undiagnosed and misdiagnosed Lyme disease in these special populations.
I look forward to your response.
President, Patient Centered Care Advocacy Group
Advisor for Research and Public Policy, Mothers Against Lyme
Bruce Fries is based in the Washington DC area.