The federal Tick-Borne Disease Working Group last week issued its first report to Congress, confirming what Lyme disease patients and their caregivers have known for decades—that there is a “serious and growing threat” of tick-borne diseases throughout the nation, and that the government needs to invest more in research, prevention and treatment of these illnesses.
The panel was first convened in December 2017 by the Department of Health and Human Services (HHS) in accordance with the 21st Century Cures Act. Its mission was to bring together scientists, researchers, physicians, and policy experts along with patients and their families to make recommendations that address the spread of tick-borne diseases. Two more reports will follow over the next four years.
“This document is an important first step by the U.S. government in acknowledging what we know must be done to curb the growing Lyme and tick-borne diseases epidemic and end the long-term suffering of hundreds of thousands of individuals,” said Timothy J. Sellati, Ph.D., Global Lyme Alliance’s (GLA) Chief Scientific Officer. “We thank everyone for their hard work and particularly commend the Working Group’s Chair—John Aucott, M.D., a GLA research grantee— for his leadership.”
Numerous recommendations related to Lyme and other tick-borne diseases are included in the 108-page report. Here are a few that GLA believes are particularly urgent:
Research New Diagnostic Tests (Recommendation 5.1)
For years, a Lyme disease diagnosis has been problematic. The standard two-tiered test used by mainstream medical authorities and insurance companies is highly unreliable, failing to pick up early disease more than 55% of the time. GLA supports the Working Group’s recommendation to “evaluate new technology or approaches for the diagnosis of Lyme and other tick-borne diseases.” GLA has long stressed the urgent need to develop accurate, dependable diagnostics and methodologies that can lead to reliable diagnostic testing and we are currently funding the development of several such tests.
Expand Knowledge of Persistent Illness (Recommendation 6.1)
Even if treated early, up to 20% of individuals bitten by ticks fail early treatment and become chronically ill. GLA believes strongly in the need to study long-term persistence of symptoms. Thanks to early support from GLA, which included a 2013-14 research grant, Northeastern University’s Kim Lewis, Ph.D., identified not only Borrelia burgdorferi persisters, but also a regimen for eradicating chronic bacterial infections. Under the aegis of a 2017-18 GLA grant, Dr. Lewis continues to identify drugs and drug combinations useful for treating Lyme disease more effectively than current therapies. Another GLA grantee, Ying Zhang, M.D., Ph.D., of Johns Hopkins Bloomberg School of Public Health, is studying how essential oils can kill persister bacteria where traditional antibiotics fail and how antibodies against persister antigens may better identify Post Treatment Lyme disease Syndrome patients.”
Educate More Health Care Professionals (Recommendation 4.4)
With far too many patients still being initially misdiagnosed, the Working Group recognized the importance of educating more health care professionals about Lyme and other tick-borne diseases. GLA has long been committed to educating the medical community about Lyme through its CME-accredited educational programs for healthcare professionals. Moreover, our Physician Training Program allows clinicians to study alongside physicians experienced in diagnosing and treating Lyme and its co-infections.
“We commend HHS for its efforts to increase awareness of Lyme disease,” said Dr. Sellati. “It is our hope that Congress will now provide the essential funding to advance Lyme research and education programs. Ever since 1998 when Global Lyme Alliance funded its first research initiative, we have been working to shift the paradigm for Lyme disease research, and we appreciate the new impetus in federal involvement.”
In a separate release on the state of tick-borne diseases in the U.S., the Centers for Disease Control and Prevention (CDC) last week upped its projection of those in the U.S. infected annually by Lyme to 42,743 cases. Using the CDC’s own estimate that Lyme is under-reported by a factor of 10, this means there are 427,430 new cases reported a year.