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
PA State Rep. Jonathan Fritz recently posted in a newsletter...
Friday, May 4, 2018
Prevent Lyme: Check for Ticks
Pennsylvania has led the nation in confirmed cases of Lyme disease for three straight years and for the first time deer ticks have been found in each of Pennsylvania’s 67 counties. The 2014 Lyme disease report released last year by the Department of Health showed 7,400 cases of Lyme disease reported in the Commonwealth.
In an effort to address this issue, Department of Health recently launched “Don’t Let a Tick Make You Sick,” a campaign aimed at raising Lyme-disease awareness."
I would like to point out this data is from 2014!!
The CDC has published 2016 data which is old at this point as well. The 2016 Data also shows PA continuing to lead the nation in confirmed cases of Lyme disease. That is 5 years as of 2016!
We need to do better.
We need to publish current information to help the public realize how bad this epidemic is.
In 2016 the CDC reported 11443 new "reported" cases of Lyme disease in Pa. That's approx. 2000 new cases in each of the last 3 reported years alone, and the cases in Susquehanna County in 2016 were only 85.
Our LDC, Inc. received information from two local facilities each reporting close to 200 cases by October of 2017. That's close to 400 from only two facilities, and roughly 300 new reported cases over what was reported in 2016 right here in Susquehanna County.
For Prevention Tips please use the link "Prevention" tab.
May is Lyme Disease Awareness Month!
Thursday April 26th, the Susquehanna County Commissioners are set to proclaim May as Lyme Disease Awareness Month again this year. If you can attend this meeting to show your appreciation please do!
Saturday May 12th, 2018 1:00 PM
Lyme Disease Coalition, Inc. will have a tent set up on the green with information and awareness items.
A group of concerned citizens will be walking a short walk (due to many patients limitations) from the bottom of Public Avenue in Montrose, PA to the top Courthouse stairs to help raise awareness.
This will be our first year of what we hope to be an annual event. Interest is growing and we hope to include other organizations related to the conditions caused by Lyme and associated diseases.
Updates as the date grows closer will be posted on the website calendar, as well as facebook page. Please follow and share the event to encourage a large turnout. Wear green or something Lyme Awareness related to show your support.
If you'd like to volunteer to help with organizing or get involved in meetings, make a donation etc... email: email@example.com
http://lymediseasecoalition.org (Events tab)
Lyme Disease Coalition, Inc. was recently asked to be a part of two local events, the Susquehanna County Resource Day and the Endless Mountains Empowerment Summit for Women on March 24th, 2018.
Thanks to the community and it's support of funding along with materials and supplies we were able to participate at both events with an estimate of approx. 200 attendees at each. These events each contribute to the area with information beneficial to the residents of not only Susquehanna County but also several surrounding counties. Gift baskets were awarded to those who attended in raffles throughout the day.
Lyme Disease Coalition, Inc. gave away a free tick kit at each event and free Sawyer Products as well as Butler Home Product. We thank these sponsors for their contribution to our "Target the Ticks" campaign.
The young ladies from Susquehanna Rocks painted a rock for us to help raise awareness too. The rock was left somewhere in Choconut and is to be found then replaced in another location for someone else to do the same. Once the rock is found the finder should post on their profile or that of one of the organizations and share to the other so we can follow the progress. We hope with each "find" someone will be made aware of the dangers of ticks and the diseases they carry.
Dr.Mather demonstrates one of his tests for infection. While Colleen Schake gives prevention tips to a captive audience.
Hundreds attended this informative event, where many asked for us to give presentations to their groups. Others were excited to possibly be trained to give more presentations to the groups they serve.
Networking with others to #worktogether to help patients.
It was a pleasure to have time to talk with Dr.Mather a bit and learn some of what his practice does.
We have a great start for a good thing and hope to serve many more in this long journey combating the effects of Lyme and associated diseases.
This was a FREE event to our county organized by Commissions Warren & Hall. It was a very nice turn out. Thank you for your service and to all those who attended!
Several Representatives attended and several more introduced themselves as running for offices in the next election. This shows just how important FREE events such as these are.
Congratulations on a job well done
Karen Mitchell and Susie Simpson tend the table @ the women's empowerment, with a line waiting to talk with them.
Thank you so much for your hard work!!
(Unfortunately there was not a photo taken of the "tick kit" winner at this event.
Be sure to use the link above to check the calendar of events for upcoming public events.
Use the contact us link to schedule an event for us to attend or to give a presentation to your group.
"INFECTIOUS DISEASE Feb. 16 2018
Update on Subcommittee Membership (posted March 2, 2018) The Department of Health and Human Services announces changes to the composition of three of the six subcommittees of the Tick-Borne Disease Working Group (Working Group). The changes were made in response to three members who did not accept the invitations they received to be a part of a subcommittee. New members were selected from the list of existing nominees by the Co-Chairs of the affected subcommittees. The Chair and Vice-Chair of the Working Group provided input and approved the final changes. Robert Bransfield, MD, a private practice physician and Associate Clinical Professor in the Department of Psychiatry at Rutgers-RWJ Medical School, has replaced Susan Green, JD, on the Access to Care and Support to Patients subcommittee. After careful consideration, Ms. Green withdrew her name. David Roth, JD, has accepted a Co-Chair position on the Testing and Diagnostics Subcommittee, of which he is an existing member. Vanilla Singh, MD, was not able to accept the invitation to serve as Co-Chair because of additional duties she has been asked to perform in the Office of the Assistant Secretary for Health. Dr. Singh remains a federal member of the Tick-Borne Disease Working Group. Holly Ahern, MS, Associate Professor of Microbiology at SUNY Adirondack, has accepted a position on the Testing and Diagnostics Subcommittee. David Walker, MD, who was selected for the Vaccine and Therapeutics subcommittee, withdrew his name for personal reasons. The subcommittee will proceed with the existing members.