November 14, 2018
Tick-Borne Disease Working Group Calls for More Resources for Research, Prevention, Diagnostics and Treatment
The Tick-Borne Disease Working Group, a federal advisory committee established by Congress in the 21st Century Cures Act, issued its first report today. The report recommends a multi-pronged response to address these diseases that affect more than 300,000 Americans each year.
Top recommendations included increases in federal resources to meet urgent research and patient care needs, such as enhanced surveillance, prevention, diagnostic and treatment options. The Working Group identified the following priorities:
- Improve early and accurate diagnosis and treatment.
- Strengthen national surveillance.
- Understand immunological mechanism (for example, pathogen-host interaction) of immune protection for Lyme disease and other tick-borne diseases.
- Develop new rapid and accurate lab tests.
- Develop antibiotic combination and/or therapeutic options for treating acute and persistent illness.
- Encourage the development of strategic plans for tick-borne disease federal investments.
- Dedicate funding to tick-borne diseases and evaluate related activities using performance indicators and clear metrics for success.
- Characterize how tick-borne disease affects U.S. national security, military readiness, and the health and wellness of active duty service members, veterans and their families.
“Patients whose lives are devastated by ongoing effects of tick-borne illnesses are counting on emerging scientific research, evidence-based policy and the healthcare establishment – including the federal government – to provide solutions,” said Adm. Brett P. Giroir, M.D., assistant secretary for health, U.S. Department of Health and Human Services. “I thank the Working Group for its efforts to produce this report, which will inform our efforts to prevent, diagnose, treat and cure these potentially debilitating diseases.”
Tick-borne diseases have become a serious, potentially deadly, and rapidly growing threat to public health. Lyme disease alone is estimated to affect more than 300,000 Americans each year, with the number of cases having doubled since 2004. However, only about one-tenth of those cases are reported to local and state health departments and the CDC. Many patients and advocates submitted comments to the Working Group, describing debilitating symptoms from tick-borne diseases that require prolonged treatment often resulting in large medical bills that are not reimbursed by medical insurers. New pathogens continue to be discovered, further increasing public health risks and costs for the U.S.
“This report is an important first step in bringing together all relevant stakeholders to develop solutions to this critical – and growing – public health problem in the U.S. today,” said Working Group Chair John N. Aucott, M.D., associate professor, Johns Hopkins University School of Medicine, and director, Johns Hopkins Lyme Disease Research Center. “The bottom line is: we need to find better ways to care for our patients and these recommendations will help us do that.”
The Working Group is administered by HHS. Its 14 members represent a variety of stakeholders, including providers, scientists and researchers, patients and family members, patient advocates and federal members. Members were charged with providing expertise and reviewing all HHS efforts related to tick-borne diseases to help ensure interagency coordination, minimize overlap, and to examine research priorities. The next Working Group report is due to Congress and the HHS Secretary by December 2020.