May 25th, 2018 Lyme Disease Coalition, Inc. received news, the new Lyme and Tick-Borne Diseases Center has received approval…
During the fourth annual Binghamton University Lyme Disease Conference, on May 5th, 2018, Dr. Ralph Garruto Ph.D., announced their plans to develop a nationally recognized Research Center. Initially, the center will be implementing 21 research projects that fall within three foundational pillars of the Center.
Eighteen Binghamton faculty from the new School of Pharmacy and Pharmaceutical Sciences, from Harpur College, and from the Watson School of Engineering, in collaboration with faculty from SUNY Upstate Medical University, SUNY College of Environmental Science and Forestry, SUNY Broome, SUNY Delhi, and United Health Services (UHS) hospitals and clinics, have agreed to partner in this endeavor.
Dr. Garruto said, “Our research faculty and physicians are well able to implement aspects of the Center’s three foundational pillars.”
Diagnostics and Treatment, Public Health Education and Outreach, and Ecology, Epidemiology, and Risk Modeling.
Within these three foundational pillars will be:
Epidemiology: Integrative models of disease transmission and spread
Diagnostics: New diagnostic tools for both acute and chronic Lyme disease and other TBDs
Public Health: Mitigation strategies, risk assessments, and policy changes to enable delivery of therapy to patients via pharmacies
Research Education: Training of next generation researchers (Undergraduate and Graduate students)
Outreach: Expansion of outreach education on Lyme and other tick-borne diseases. Training secondary school teachers, teaching grade and secondary school students, programs for the public including adult education classes, and Annual Lyme Conferences at SUNY Binghamton for the public and health care providers.
The 2019 annual Lyme Conference at Binghamton University will likely be a two-day event, so mark your calendars for the April/May event.
Our local Lyme Disease Coalition, Inc. is proud to be among the listed groups of organizations included in this area’s first Tick-Borne Diseases research center and hope to add value with shared information and experiences.
For more information, please visit the website of the Tick-Borne Diseases Center at: https://www.binghamton.edu/centers/lyme-disease-center/
Lyme Disease Coalition, Inc.
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.
While Lyme disease is still on the rise, Lyme Disease Coalition, Inc. (LDC,Inc) has been out creating awareness. May 12th, was the first public awareness event held by the LDC, Inc. Several braved the rain and still came out to support awareness in the community, gathering under tents to swap stories, share prevention tips and purchase awareness and prevention items even getting in on winning raffles. The rain did not stop a couple from playing “Tick Toss”, knocking out the ticks on the target for extra points.
May 16th, the LDC, Inc. also gave their “Tick Talk for Kids” PowerPoint presentation to the Children at Choconut Elementary School reaching over 250 students, faculty and their families with take home packets. The students were very attentive and asked some great questions after the presentation. The LDC, Inc. also left the school nurse a FREE Tick Aid Kit to aid in the prompt removal of ticks found on children. After the presentation, the faculty also asked additional questions and took down information to acquire product to help keep their families safer. The stories the children told, also let us believe that awareness is working. Several told of how their parents and grandparents keep product available and use it not only on their families but also on their pets. Others told stories of prompt treatment when ticks were found on family. Immediately after the presentation, the school nurse removed a tick found. This school nurse is saving the ticks marked with the date and other information to give to the parents and allow them to follow up with their health care provider and / or send them in for testing. This is exactly what we like to see. This school is doing a model job helping to prevent the spread of tick-borne disease.
Two of the questions we would like to touch base on are;
1) How many ticks are there? Well are we talking about how many of just one kind of tick or how many different types of ticks are there?
There are actually over 800 different tick species according to Purdue University. “There are an estimated 899 species of ticks in the world, of which over 90 occur in the continental U.S. About 80 species are in the family Ixodidae, known as "hard ticks," and about 10 species are in the family Argasidae, known as "soft ticks."
We look at four main ticks here in PA at this time, which are the 1) the American dog tick,Dermacentor variablis ; 2) the blacklegged tick, Ixodes scapularis ; 3) the lone star tick, Amblyomma americanum ; and 4) a ground hog tick, Ixodes cooke according to Penn State University.
These tick species each can carry several types or strains of bacteria creating different types of illness. For more information on ticks and the diseases they can carry, we suggest both Penn State and East Stroudsburg University web sites.
2) Can you use the tick twister, oils and / or a cotton swab to remove ticks?
These methods are NOT recommended, as scientists believe the more a tick is agitated the greater chance of transferring the bacteria into our systems. The recommended way to properly remove ticks is with a pointed set of tweezers grabbed as close to the skin as possible and pull at a 90-degree angle gently lifting until the tick releases. Tick twisters can be used the same way, do not twist just get the tick between the crevice and pull up gently lifting until the tick releases. There are also tick cards made the same way, that can also be used. The goal is to lift the tick up and out with the least agitation as possible.
The Lyme Disease Coalition, Inc. also has several private presentations scheduled over the next several months, as well as another “Tick Talk for Kids” presentation coming to the Hallstead / Great Bend Library July 10th, at 10:15 am in the Library Park. (Please bring “treated” blankets to sit on).
Where you can find information: Susquehanna County Library, Hallstead / Great Bend branch, EMHS waiting room, http:lymediseasecoalition.org
Also, follow the local events on Facebook and the website: http://lymediseasecoalition.org https://www.facebook.com/pg/LymeDiseaseCoalitionInc/events