HR 5878, "National Lyme and Tick-Borne Diseases Control and Accountability Act of 2018", was introduced on Friday May 18th, is to create a new structure—the Office of Oversight and Coordination for Tick-Borne Disease—this office would oversee efforts by the U.S. Department of Health and Human Services (HHS) to prevent and treat Lyme disease. The office would also be charged with ensuring collaboration between various departmental efforts.
Other bills have been introduced in the past such as: HR665 introduced 2/2/2015 requiring the department of Health and Human Services to establish a Tick-Borne Diseases advisory committee to advise HHS and other federal agencies and included coordination and inclusion language.
S.1503 — 114th Congress introduced 6/4/2015 Lyme and Tick-Borne Disease Prevention, Education, and Research Act of 2015 also included much of the same language.
This new legislation HR 5878, based on much of the same principles of the past, may hold new promise with both the house and the senate on board to make improvements and help combat the epidemic Lyme and Tick-Borne diseases has become.
The new legislation directs the Secretary of Health and Human Services to establish the Office of oversight and Coordination for Tick-Borne Diseases to be headed by a director appointed by the Secretary in the Office of the Secretary. The Office is to create, oversee, update and coordinate programs and activities across the agencies and offices of the Dept. of Health and Human Services. The objective is to ensure accomplishments of expanding and enhancing research, surveillance and reporting, diagnostic tests and treatments in all areas related to Lyme and tick-borne disease. The bill would cover designing and conducting clinical trials to support recommendations as well as developing and maintaining patient registries and experiences of patients relating to tick-borne diseases including treatment and outcomes protecting patient confidentiality. Health care professionals would document experiences in diagnosing and treating including outcomes.
Global coordination and integration is specified and includes language to include Tick-Borne Disease Working Group latest findings to be submitted to the Secretary and congressional committees.
Priority would be based on assessments of disease burden in the US.
The Secretary in coordination with other federal agencies and offices are given two years after enactment, to develop and submit to Congress a national strategy for the conduct and support of Lyme and other tick-borne diseases and disorders programs and activities and no less than every two years after to update the strategy.
The Strategy is to include budget requirements, assessment of all federally funded programs and activities related to surveillance, diagnosis, treatment, education and prevention. Evaluations and assessments of Federal grants awarded are to be conducted and include patient-centered outcomes.
The legislation includes deadlines of two years for the implementation of the majority of the activities to begin. However, it also sets deadlines to send reports out to the public in a timely manner after hearings and meetings take place. No later than nine months after the enactment of this piece of legislation with the consultation of the Tick-Borne Disease Working Group is to design a survey for patients and advocates, physicians, scientists, etc.… to gain their input with results being posted no later than six months after the completion. These are important dates and timeframes to remember and be sure to get involved in.
While the brief outline looks like this new legislation will incorporate much if not all that is needed to grasp what is going on with the epidemiology of Lyme and other Tick-borne related conditions, the public and advocates should read closely, the fine details in these proposed pieces of legislation. Reading the “fine print” has gone a bit by the wayside and needs to be reinforced. In reading the details you may find much of this is based on the authority of the Secretary in connection with the CDC of which has repeatedly let the Lyme Community down.
The need for outside groups and organizations will continue to be needed as watch dogs for the individual aspects of this new Lyme and related conditions legislation.